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					                                   G R E AT E R P H I L A D E L P H I A C H A P T E R

                                  news                                                                                      Fall 2007

                                      30TH ANNIVERSARY PICNIC

    ugust 12 was a glorious day!
A   The sun shone brightly on
the more than 250 ALS revelers
who came out to celebrate the
Chapter's 30th Anniversary at a
picnic at Mermaid Lake in Blue
Bell, PA. PALS, supporters,
families and friends who have
been associated with the Chapter
since our early years enjoyed a
day of barbeque, swimming, waterslides, basketball, horseshoes, softball, volleyball, games and good conversation.

It was a trip down memory lane for some of the pioneers including as Bruce and Jane Berkowitz, Valarie Swartz, the Yosts,
the Oppenheimers and the Chapter staff. The gleaming sunlight poured through the cloudless sky, as the glistening pools
attracted all generations for an afternoon of fond remembrances. <

INTRODUCING                                                                               President’s Message ........................p. 2
the Young Friends of The ALS Association                                                  E.D.’s Musings................................p. 3
                                                                                          Neurologist’s News..........................p. 4
We are pleased to introduce The Young Friends of The ALS Association. The Young
                                                                                          Research Update ............................p. 5
Friends will be a dynamic group of individuals over 21 years of age who are
                                                                                          Life Income Gift Help......................p. 6
dedicated to furthering the goals of The ALS Association, Greater Philadelphia
                                                                                          Advocacy Days ................................p. 7
Chapter. This group will promote our mission to a network of people different from
                                                                                          Patient Profile: Larry Dodds .............p. 8
our traditional audience and engage them at a time when they are looking for a
                                                                                          Walks to D’Feet ALS® ............pp. 10-11
“cause” to both volunteer for and support financially. This membership group and          Past & Upcoming Events ........pp. 12-13
volunteer committee will meet on a monthly basis to enjoy happy hours, tours and          Patient Services Events/IMO ...pp. 14-15
cultural activities (both fee-based and free) all while raising funds and awareness for   Calendar of Events ........................p. 16
The ALS Association.                                            (Continued on page 3)
ALS-0907-NL (10 5).qxd               10/11/07   3:03 PM   Page 2


      Chair, Board of Trustees
                                          Board Chair’s Message BENJAMIN OHRENSTEIN
      Benjamin S. Ohrenstein, Esq.

      Chair, Board of Overseers                                    his column is titled “board     conjunction with the Board of Overseers. There
      Ellyn C. Phillips, President

      Vice Chairs
                                                               T   chair's message”. Have you
                                                               ever wondered what that means
                                                                                                   are also Board committees, such as the Budget
                                                                                                   and Finance Committee, the Patient Services
      Dale J. Shimer
      Patricia M. Lake Quinn
                                                               and what my role as Board           Committee, the Audit Committee, and the
      Secretaries                                              Chair is - other than to write      Governance Committee, consisting of some, but
      Susan L. Ross
      Wendy Schermer, Esq.                                     this column? Let me try to          not all of the members of the Board as well as
      Treasurer                                                provide you with some insight.      some non-Board members, which meet on an
      Laurence J. Delaney, Jr.
                                                                                                   irregular basis throughout the year. I am
      Jeffrey L. Abrams, Esq.              Our Chapter is a Pennsylvania non-profit                responsible for the staffing and the operation of
      Rhoda Albom
      Irving Altman                        corporation. Although it clearly has a legal            those committees and, among other things,
      Virginia Amaro
      Gila Aviram
                                           relationship with The ALS Association, the              therefore, attend all of those meetings as well.
      Michael Barkann                      national organization that shepherds and provides
      Julie Charlestein Benjamin
      Bruce Berkowitz                      oversight and cohesion to the various chapters          I am blessed with a Board of conscientious,
      Ellen Brosso
                                           throughout the country, we are a separate legal         skilled, and caring people. They are all hard
      Suzanne Bruce
      Tony Burns                           entity and are required to operate within certain       workers and do a terrific job of keeping me on
      Marcy Cardonick
      Doug Carpenter                       parameters, including having a Board of                 my toes. In truth our Chapter has grown into a
      Malvina Charlestein                  Directors. Okay, but what does that mean?               very complex organization. To do its job properly
      Morton L. Charlestein
      William Conners                                                                              the Board of Trustees is constantly struggling to
      Ann Cutler
                                           In general terms the Board of Directors is the          redefine its governance responsibilities. As the
      Michele DeVicaris
      Christian Dyer                       governing body of the Chapter. Its function is          Chapter grows we continue to grapple with
      Arthur R. Ersner, MD
      Vickie Farber                        to establish the operating policies of the              issues of strategy and programming and with
      Lawrence Finkelstein, Esq.           Chapter (our “business” is to provide patient           the constant concern of the management of our
      Sidney Gable
      Nancy Giles                          services, help fund research, educate the               financial risks and the oversight of our processes
      Andrew A. Goldman
      Robert Goudie
                                           community, and advocate about ALS matters -             and financial controls. Our budget process is
      Zelda Greenspun                      but from an operational perspective how do we           daunting. The Board of Trustees also takes
      Kent C. Griswold
      Thomas H. Hipp                       do that?), appoint the executive officers of the        seriously its concern about the quality of its
      Hara K. Jacobs                       Chapter, provide management oversight, and              human resources, particularly in view of the
      Richard T. Kanter
      Elkan Katz                           make major financial and business decisions,            Chapter's responsibility for patient services.
      Frank J. Kelly
      Robert A. Korn, Esq.
                                           such as creation and supervision of the
      Ellen Farber Kurtzman                Chapter's budget. We are somewhat unique in             Think about what our Chapter does and why it
      Leonard M. Lodish
      Susan F. Lodish                      that we have divided our Board into two parts:          exists. The Chapter deals with life and deals with
      JoAnn Marano
                                           one called the Board of Trustees, the other             it on a daily basis. Though we don't particularly
      Christina Martin
      Linda Matz                           called the Board of Overseers. The Board of             articulate it as such, life is truly a group project.
      Paul McHendry
      Kathleen A. McLamb                   Trustees performs the governance functions and          The Board of Trustees knows that and, therefore,
      Shelbie Oppenheimer                  the Board of Overseers oversees ALS advocacy            its members all recognize that it also has even a
      Sandra Piersol
      Doug Proctor                         and the implementation of fund-raising policies         greater responsibility of setting the highest possible
      Anne B. Putney
                                           and issues as well as taking responsibility for         standards of integrity and ethics - the way the
      Dan Quinn
      Saul Reibstein                       special events.                                         Chapter does things and how it functions as an
      David M. Ricci
      Mike Rifkin                                                                                  organization. The Board of Trustees sets the
      Richard B. Ruben                     I chair the Board of Trustees, that is, I am the        ethical tone of the Chapter through its approach to
      Richard Schiffrin, Esq.
      Shonda Schilling                     person who is responsible for presiding over the        governance. I am pleased to say that I am the
      Lisa Schwab
      Al Slipakoff
                                           Board of Trustees and leading it in a manner that       person who is responsible for presiding over our
      Phillip Speiser                      hopefully results in its properly and fully             Board of Trustees and leading it.
      Albert J. Stunkard, M.D.
      Craig R. Tractenberg, Esq.           performing its governance functions. We are all
      Kathryn Voit                         volunteers. We meet a minimum of at least four          And oh, yes, I also write this column. <
      Gerard Voit
      John Weber                           times a year as a complete Board, once in
      Felice G. Wiener, Founder
      Lauren Stevenson Yacina
                                                      The Board Chair Message by Benjamin Ohrenstein alternates issues with the President's Report.
                        recently had the       all that are journeying with ALS.             is no doubt that therapies and a cure can
                     I  pleasure of visiting
                     a family that is
                                               He told me something that was not really
                                               new information, but he said it with such
                                                                                             be found, it is a question of when. A
                                                                                             large part of the answer depends on the
                     currently living with     conviction and passion that it proved to      allocation of resources and an increase in
                     ALS. I find that I        be a re-awakening for me. He said, “the       funding.
                     generally take away       only way that we are going to beat this
                     more from these days      thing is more money, and I want to help       Won't you join me in re-committing to this
than I give. Inevitably the discussion         raise money for research and for              fight? Take every opportunity to
finds its way to the same place, the hope,     services.” We spoke for a long time about     communicate with public officials, the
wish, desire, prayer for answers. We all       the need to enlist the national and state     need to dedicate our public agenda to
want a cure or, alternatively, a therapy       government to sharpen their focus on,         finding answers to ALS.    Help The ALS
that will slow the progression of this         and increase the pace of, research into       Association stay in the forefront of ALS
terrible “beast” called ALS.                   ALS as well as other diseases. He clearly     research through your generous donations,
                                               believes, as I do, that the answer to ALS     through raising funds and awareness, and
This particular day, the husband of the        is no longer beyond the capabilities of       through your participation in Chapter
person with ALS regaled me with stories        modern science; it is simply beyond the       events.
and anecdotes of his earlier life. I           current dedication of time, talent and
learned about his time in World War II         resources.                                    You can take the first step right now. Log
and his post-service college experiences.                                                    onto our website,,
The stories were fascinating and               The ALS Association is proud to be the        click “Sign Up to be an ALS Advocate”
captivating, just as the stories and           single largest non-public funder of ALS       and register as an ALS Advocate. You will
memories that we all have fascinate and        specific research, but the need is for a      receive periodic emails updating you
captivate those that take time to listen.      concerted effort on the part of everyone to   about current national and local issues
                                               decide to make health issues a public         that relate to the fight against ALS. You
However, the thing that sticks with me;        priority. As my new friend said, the          will also have a simple, ready made way
the nugget that I was able to take away        reason we were able to put a man on the       to communicate your personal stories and
and share with you, is his fervent desire      moon is because it was a big, bold public     passions to your elected officials. It only
and passionate commitment to do                priority and, with the availability of        takes a minute. It doesn't cost a thing.
something to make a difference, not only       resources, a public/private partnership       It will make a difference. <
in the life of his wife, but in the lives of   enabled the impossible to happen. There

                                                   (Continued from cover)

   Congratulations                                 INTRODUCING the Young Friends of The ALS Association
      to Ben Ohrenstein on                         The Young Friends Group will provide a fun and meaningful way to get involved and
                                                   make a difference in the life of someone living with ALS. The membership fee of
    being named one of the                         $30 per year will entitle members to the following:
         75 Greatest Living                        • ALS Association Newsletter
      Philadelphians by the                        • invitations to special events
      Philadelphia Eagles &                        • invitations to monthly happy hours at chosen locations
                                                   • discount at fee based Young Friends events
     Dunkin Donuts, for his
                                                   • discount to the ALS Association's Annual Hot Chocolate event.
        contributions to our                       To become a member of the Young Friends or to find out more about the group,
            Chapter and his                        visit and click on How You Can Help and then Become A
            commitment to                          Young Friend.
        community service.                         Have a myspace page? Make us your friend: <

                                                            1 - 8 7 7 - G E H R I G - 1                            3
ALS-0907-NL (10 5).qxd       10/11/07     3:03 PM       Page 4

       Translational Research:                                              APPLICATIONS FOR ALS
                          Lauren B.                       research dollars. The story of how              Over the last few years, there have been
                          Elman, M.D.                     research in ALS has progressed over the         multiple high profile, randomized
                                                          last 15 years conforms to many of the           controlled trials of potential disease-
                                                          principles of translational research.           modifying therapies in ALS, including
                                                                                                          topiramate, celecoxib and minocycline,
                                                          Having a good model system is the key           among others. All proceeded based on
            recent article on the front page of           to effective translational research. An         pre-clinical data gained from in-vitro
        A   the Philadelphia Inquirer posed
        the question of whether research
                                                          appropriate model is an animal that
                                                          manifests disease clinically in a pattern
                                                                                                          models and trials in the ALS mouse model.
                                                                                                          Whereas each of these drugs was effective
        dollars directed at finding a treatment           similar to affected people; it is an added      at delaying the onset and/or slowing the
        for ALS have been wasted (Costly Error            bonus if the etiology of disease is the         progression of disease in the mouse model,
        in Health Research? 9/4/07).                      same in the model system as in people.          none of the drugs has proven effective in
        Answering this question requires an               In most cases, ALS is a sporadic disease        people. This has caused obvious
        understanding of the scientific method            with an unknown cause. The disease is           disappointment and frustration among
        and translational research.                       familial in 10% of people with ALS. In          patients, family members and researchers
                                                          1993 researchers established that               alike. The failure of treatments in people
        Translational research is the process of          mutation in the gene encoding the protein       after showing promise in the ALS mouse
        bringing science “from the bench to the           superoxide dismutase is responsible for         does call into question whether the mouse
        bedside” (and back). The bench refers to          20% of familial ALS. To date, this              model currently in use is optimal.
        traditional laboratory-based activities that      remains the most common known etiology
        involve study of non-human organisms,             of ALS. Unfortunately, discovery of this        Recently, colleagues at the University of
        from cell culture                                                            gene has not yet     Pennsylvania identified a pathological
        models in a petri                                                             provided            protein present in the brains and spinal
        dish up through                                                               targeted therapy    cords of ALS patients. The protein is
                                  A recent article on the
        non-human                                                                     for ALS largely     called TDP-43 and its significance is still
        primates.                    front page of the                                because it was      being investigated, but it is certainly a new
        Bedside research                                                              not immediately     clue to the pathophysiology of the disease.
                                   Philadelphia Inquirer
        includes clinical                                                             evident why this    Interestingly, this protein is not found in
        trials as well as         posed the question of                               mutation causes     the tissue of patients who had familial
        epidemiological                                                               ALS; research       ALS. This finding may suggest that there
        research designed
                                 whether research dollars                             into this           is something fundamentally different about
        to further                 directed at finding a                              question is still   familial ALS due to SOD mutations and
        elucidate the                                                                 ongoing.            sporadic ALS, and may further suggest that
        clinical patterns
                                 treatment for ALS have                               Researchers         findings based on the SOD mouse model
        and features of               been wasted …                                   worked rapidly      may not be generalizable to sporadic ALS.
        disease.                                                                      to develop a
        Traditionally,                                                                transgenic          However, this does not call into question
        when science                                                                mouse model of        the principles and importance of the
        suggests a reasonable candidate for drug          ALS by inserting mutant SOD1 gene from          methods underlying translational research
        therapy, based on mechanism                       people affected with familial ALS into the      that have guided ALS research over the
        of action or known biological effect, it is       mouse genome. These genetically                 last decade. “Bench to bedside” is the
        tested in model systems and if it proves          engineered mice developed a condition           most efficient way to test large numbers of
        effective, then it can be brought to clinical     clinically similar to ALS characterized by      medications preclinically and it has a
        trial for further study. Translational            progressive muscle weakness that followed       proven track record of success. ALS has
        research requires communication in both           a predictable clinical pattern with respect     proven to be an incredibly complex
        directions to be most effective. Clinicians       to time of onset and disease progression.       problem to solve. We have high hopes that
        may develop special insights into disease         The ALS mouse was then ready for use to         TDP-43 and all of the new clues that it
        that may inform directed bench research,          study the pathophysiology of motor neuron       yields will lead us to an effective
        which may then lead to large scale clinical       disease and to test candidate medications       treatment, but it will take time, energy and
        trials. This model is recognized by the NIH       for efficacy in stopping or slowing the         the tools of translational research to clarify
        and is fundamental to the NIH roadmap             progression of disease.                         its importance. <
        designed to maximize effectiveness of
Research Update

Research Department

The ALS Association
Roberta Friedman, Ph.D.,

Information Coordinator,
                                              course of the ALS symptoms. Knowing
                                              how the mitochondria contribute in ALS
                                              will guide therapeutic efforts in the
                                              disease. Da Cruz will also see whether
                                              mitochondria are compromised primarily
                                                                                           General Hospital will build on progress
                                                                                           achieved with funding from The ALS
                                                                                           Association in projects originating under
                                                                                           the direction of Jeffrey Macklis, Ph.D., at
                                                                                           Harvard. These investigators have found
                                              in motor neurons or in muscle. For this,     some of the control signals that guide
    our young investigators are
F   poised to join the effort to
find effective therapies for ALS
                                              she will use mice that have been
                                              genetically modified to have enhanced
                                              mitochondrial activity either in motor
                                                                                           stem cells in the developing brain to send
                                                                                           their long extensions, called axons, down
                                                                                           the spinal cord to connect to the lower
funded by The Milton Safenowitz               neurons or muscle.                           motor neurons that contract muscles.
Post-Doctoral Fellowship for ALS                                                           Rouaux will use genetic engineering to
                                              The Metabolome of the Cerebrospinal          confirm if these signal molecules are
Research. These promising
                                              Fluid: Signature for ALS                     directing certain stem cells to become
scientists have proposed
                                                                                           the motor neurons that extend down the
innovative and important efforts              Gurudutt Pendyala, Ph.D., working with       spinal cord from the cerebral cortex
that will accelerate progress in              Howard Fox, M.D., Ph.D., at The Scripps      (cortico-spinal or upper motor neurons)
the field. The ALS Association is             Research Institute, La Jolla, Calif., will   during development. The information
especially committed to bringing              seek to find a marker of the disease in      should give important insights into stem
new concepts and methods into                 the products of metabolism of the human      cell therapy for ALS that could show a
                                              body as well as in animal models for ALS.    way to produce upper motor neurons to
ALS research, and young
                                              Changes in the body's metabolism might       replace the dying ones.
scientists play an important role
                                              be reflected in the small molecules
in this process.                              produced by the body's chemical              Effect of Astrocytic Nrf2 Activation
                                              reactions and present in the fluid that      on the Onset and Progression of Motor
Determining the Contribution of               bathes the brain and spinal cord. The        Neuron Degeneration in an ALS-Animal
Mitochondrial Dysfunction in ALS              search through the so-called metabolome      Model
Pathogenesis                                  will uncover those metabolic products
                                              whose amounts change in response to the      Marcelo Vargas, Ph.D., working with
Sandrine Da Cruz, Ph.D., working with         disease process in order to identify a       Jeffrey Johnson, Ph.D., at the University
Don Cleveland at the Ludwig Institute at      panel of molecules that report the           of Wisconsin, Madison, will examine the
the University of California, San Diego,      presence and progress of the disorder. A     role of a defense system present in the
will study the role in ALS of the             reliable and reproducible set of metabolic   cells that surround and aid the motor
mitochondria, the cellular power supplies     biomarkers would allow faster diagnosis,     neurons. Astrocytes, star shaped cells
that fuel all metabolic reactions. Mice are   streamlined clinical trials, and a window    that buffer the motor neurons from
available that have been genetically          into the changes that could provide          potentially toxic products of normal cell
manipulated to have either enhanced           therapeutic targets. The Fox lab has an      chemistry, have a defense system headed
activities of a key enzyme within the         established record of providing              by a protein abbreviated Nrf2. With mice
mitochondria or to contain more of these      biomarkers in the field of HIV dementia      that make more than the usual amount
cell constituents. Da Cruz will breed each    and will now apply their expertise to ALS.   Nrf2 in astrocytes, Vargas will see if this
of these mice to two different mice                                                        defense system might be reinforced for
mutants, each having a different change       Molecular Controls over Early                ALS by crossing Nrf2 over-expressing
to the protein, copper-zinc superoxide        Specification and Differentiation of         mice with those making the mutant
dismutase (SOD1), responsible for some        Corticospinal Neurons (Upper Motor           SOD1 protein. This experiment should
inherited cases of ALS. Resulting mice        Neurons)                                     define whether the Nrf2 system is a way
will have changes in mitochondrial                                                         to affect the disease process and
enzymes as well as altered SOD1. These        Caroline Rouaux, Ph.D., working with         therefore a promising avenue toward
mice should be able to show if enhancing      Paola Arlotta, Ph.D., Massachusetts          effective therapy. <
mitochondrial function will aid in the

                                                         1 - 8 7 7 - G E H R I G - 1                             5
ALS-0907-NL (10 5).qxd       10/11/07      3:03 PM     Page 6

      Research Study
      Persons with Amyotrophic
      Lateral Sclerosis (ALS) Wanted
      for a Research Study

           esearchers at Penn State College of Medicine are seeking
      R    participants for a research study on Quality of Life (QOL)
      and ALS. The purpose of the study is to better understand the              For more information or to request a paper and pencil copy, call
      QOL of patients with ALS who receive different forms of care for           the study coordinator, Beth Stephens, at 717-531-0003,
      the disease. Participants will complete a questionnaire (online or         extension 283395, or by email at
      with a paper and pencil version) that asks questions about
      physical health status, quality of life, and use of medical                Study Director: Zachary Simmons, MD, Department of Neurology,
      services for care of ALS. Survey responses are confidential.               Penn State College of Medicine.

      All persons who have been diagnosed with the disease Amyotrophic           'This research study has been approved by the Institutional
      Lateral Sclerosis are eligible to participate in this study.               Review Board, under federal regulations, at Penn State College
                                                                                 of Medicine, Penn State Hershey Medical Center.' <

                                              Gift Items Benefit ALS
                                              The holidays are right around the corner, and what better to give your
                                              friends and loved ones than a gift to benefit the fight against ALS? The
                                              Greater Philadelphia Chapter has a variety of fundraising items available.

                                                          Swarovski® simulated pearls with sterling      All revenue from the sale of My Mom's
                                                          silver spacers in between the beads. The       Recipe Box will be donated to support
                                                          bracelets can be shortened or lengthened       ALS research. To order, visit
                                                          to fit your needs. The price of the  
                                                          bracelet is $35 with $5 going to our
      NOTE CARDS FEATURING THE                            chapter. Other ALS jewelry designs are         “STRIKE OUT ALS” WRISTBANDS
      PHOTOGRAPHS OF ZEEV AVIRAM (PALS)                   also available. Order yours by visiting        Red wristbands with the inscription
      Enjoy the amazing photography of PALS     , or by             “Strike Out ALS” are available at all
      Zeev Aviram with these beautiful note               calling 717-731-3420.                          chapter events for $1 each. Quantities of
      cards. Each set of 10 note cards costs                                                             10 or more will be shipped to you for the
      $20 and features a selection of his work.           “MY MOM'S RECIPE BOX” COOKBOOK                 cost of shipping and handling. Call the
      Call the Chapter at 215-643-5434 or 1-              TO BENEFIT ALS                                 Chapter at 215-643-5434 to order your
      877-GEHRIG-1 to order.                              After Lisa Katucki lost her mother to          wristbands.
                                                          ALS, her father gave her a treasure - her
      SWAROVSKI CRYSTAL BRACELETS                         mother's recipe box. She has reproduced        ALS RIBBON CAR MAGNETS
      McPherson and Company, a jeweler                    those treasured recipes in “My Mom's           Ribbon-shaped car magnets feature
      based in Wormleysburg, PA has designed              Recipe Box,” a cookbook that contains          Yankees-blue pinstripes, Lou Gehrig's
      an ALS bracelet with baseball in mind.              recipes from family, friends, co-workers,      number 4, and the words “Strike Out
      The sterling silver toggle bracelet features        and the community. Since half of the           ALS.” The magnets are $5 at all Chapter
      a sterling silver baseball, catcher's mitt          treasure is the handwriting of the person      events, or can be shipped in quantities of
      and bat charm. The bracelet is hand-                who shared it, the book includes copies        2 or more. Call the Chapter at 215-643-
      strung using Swarovski® red crystals and            of some of the hand-written recipes too.       5434 to order your magnets. <
There is Still Time to Make a Charitable IRA Rollover Gift!

    he special charitable IRA Rollover provision contained in the      • The charitable gift must be made directly from the IRA
T   Pension Protection Act of 2006 will expire at the end of this
year. This provision allows donors who are age 70 or older to
                                                                         trustee/administrator to our Chapter. If you accept a distribution
                                                                         and then forward the funds to us, the distribution will not qualify
make a gift up to $100,000 per year from their Individual                for the exclusion and will be considered taxable income.
Retirement Account (IRA) assets directly to qualified charities        • The exclusion applies only to outright gifts from IRAs. Charitable
without being taxed on the distribution.                                 gift annuities, charitable remainder trusts, and other similar gift
                                                                         arrangements do not qualify.
If you have an IRA, you may want to consider using it to make a gift   • Charitable gifts from IRAs will not be eligible for a charitable
to The ALS Association, Greater Philadelphia Chapter. Please note        income tax deduction.
the following:
                                                                       For more information please contact the Chapter's Chief
• The provision applies only to traditional and Roth IRAs. Other       Development Officer, Jeff Cline, at 215-643-5434 or

  retirement plans such as 401(k), 403(b), SEP, and SIMPLE    Please consult with your tax or financial
  plans are not eligible.                                              advisor regarding your situation before making any gift. <
• Donors must have reached age 70 by the date of the
  contribution to qualify for this income tax exclusion.

    The National Committee on Planned Giving (NCPG) is tracking information on IRA Distributions
  received by charities since the enactment of the Pension Protection Act of 2006. As of August 14,
 2007, 5,423 individual distributions have been reported with a total value of more than $96 million.

Workplace Giving - A Great Way to Support the ALS Cause

W     orkplace giving provides donors with an easy way to make
      a significant gift over time to support the fight against
Lou Gehrig's Disease. If your employer sponsors its own
company-wide giving campaign, or participates in the United
Way, you can support the ALS Association, Greater Philadelphia
Chapter by designating a portion of your regular paycheck.
                                                                       Donors may also designate The ALS Association, Greater
                                                                       Philadelphia Chapter in city, county, or school employee
                                                                       workplace giving campaigns.

                                                                       Most workplace giving campaigns take place in the fall. Now is
                                                                       the perfect time to take advantage of this great benefit or
Quite often your employer will match your donations dollar-for-        review your current nonprofit designations.
dollar which doubles the impact of your support.
                                                                       Finally, if your employer has a matching gifts program, please
In addition, The ALS Association is a participating agency in          be sure to request that your gift to The ALS Association, Greater
Community Health Charities (CHC), the largest workplace giving         Philadelphia Chapter be matched. Thank you!
program devoted solely to health. Community Health Charities
conducts public sector workplace giving campaigns in federal           For more information, contact Roxanne Walter,
government installations as part of the Combined Federal               Manager of Sponsor Relations at 215-643-5434, ext. 43
Campaign, and at state government locations. CHC also                  or <
conducts employee workplace giving campaigns in corporations.

                                                              1 - 8 7 7 - G E H R I G - 1                              7
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            Patient Profile: BOB HAINES
              efore he was diagnosed with ALS, Bob Haines spent               friends. He even claims that he
         B    much of his time outdoors. He engaged in many
         activities such as snow shoeing, cross-country skiing,
                                                                              probably would never have
                                                                              written his memoirs, which took
         canoeing, and kayaking. In addition, he used to bicycle over         him four years, had it not been
         two hundred miles a year, and volunteered much of his time           for the diagnosis. “So, from my
         to trail maintenance at Pennypack Park in                                               point of view,” he adds, “some good has
         Philadelphia.                                                                           come from even this damned ALS.”
                                                               Bob even
         Additionally, Bob has done numerous                     claims                         Bob also puts much pride in his family.
         mountain climbs, the most memorable of                                                 He and his wife, Mary Alice (whom he
         which includes a trip to Soviet Central Asia           that he                         adds is now his “super, wonderful
         in 1989 in which he and his his long-time                                              Caregiver”), raised their four children in a
         friend and fellow climber, John Weisel, failed     probably would                      house they built together in upper Bucks
         to locate the mountain they had set out to
         climb. In the end, they climbed three
                                                                 never                          County. Although his children are now
                                                                                                grown and he and his wife have moved
         different mountains instead. Bob has also         have written his                     back to their old neighborhood in
         traveled a lot, and not only to find new                                               Northeast Philadelphia, he still takes pride
         mountains to climb. He served in the Navy         memoirs, which                       in the achievements of his three daughters
         during World War II which took him to many                                             and son and the lives they have made for
         islands in the Central and West Pacific. He
                                                             took him four                      themselves. Moreover, he appreciates the
         also visited many places across the United        years, had it not                    help that his family provides him.
         States. These excursions include canoe trips
         in Eastern Canada, hiking trips in the                 been for                           Also, he has been involved in the
         Smokey Mountains of Tennessee, and rafting                                                Philadelphia Chapter of The ALS
         trips in Maine.
                                                            the diagnosis.                         Association and says, “I have never met
                                                                                                   any group of people as dedicated and
         For someone who has been as physically active as Bob, you            caring as they are. Dr McCluskey and the entire staff are to
         would think a diagnosis of ALS would really dampen his               be congratulated.” Although his life has changed drastically
         spirits. Yet, this is not the case. “I found that spending           over the years, it is clear that Bob does not let it get him
         hours on the Internet were not only amazingly informative,           down. Rather, he draws strength from a positive outlook,
         but also entertaining,” says Bob. “I feel as though I have           a sense of humor, and a support group made up of loving
         the world's best library at my fingertips.” Moreover, he is          family and friends. <
         able to enjoy good movies and spend time with close

        Couple Rides from Maine to Philadelphia on Tandem Bike
             usan and Leonard Lodish have             The Lodishes kicked off their trip
        S    taken bicycling to the
        next level! In July, the couple turned
                                                      in Bar Harbor, Maine, on Friday,
                                                      July 6. They arrived in Boston for
        to their tandem bicycle to continue a         a visit with ALS Researcher Tom
        tradition started in 1996 to raise            Maniatis, PhD at Harvard Medical
        money for the fight against ALS. This         School on Friday, July 13. They
        year, they remained in the U.S., riding       then wrapped up their trip in
        through Maine, New Hampshire,                 Philadelphia on Wednesday, July        Susan &
        Massachusetts, Connecticut, New York,         18. This year, this trip enabled       Leonard Lodish
        New Jersey, and ending in Philadelphia        them to raise over $97,000 for
        - a ride that culminated in 630 miles.        ALS research.                                 donation in support of their trip, visit
        During this trip, they made stops at                                                        the ALS Association, Philadelphia
        ALS research centers in Bar Harbor,           For more information about the                Chapter's website at
        Boston, New York and Philadelphia.            Lodish's bike ride, or to make a     <
Advocacy Update

                                               e are pleased to report that in
                                               late September, the full House
                                          Energy and Commerce Committee
                                          unanimously passed the ALS Registry
                                          Act (H.R. 2295)! The bill now heads
                                                                                           Committee Members repeatedly expressed
                                                                                           support for the bill as an important
                                                                                           component in the fight for a treatment and
                                                                                           cure for ALS.

                                          to the House floor for a vote, the final         Thank you to the entire ALS community
                                          stage of the legislative process in the          for their relentless outreach in support of

                                          House of Representatives!                        the ALS Registry Act. PALS, families,
                                                                                           caregivers and advocates from every state

                                          The Committee’s action comes just over           have contacted their Members of Congress

                                          three months after the bill was                  continually since the bill was introduced

                                          reintroduced in the 110th Congress – an          this year. In addition, ALS Association

                                          extraordinarily short amount of time for a       Chapters reached out to their grassroots

                                          bill to progress, especially considering         networks, held meetings in Congressional

                                          most bills are never even considered by a        Districts and helped to deliver our

                                          Congressional Committee. It is clear that        message loud and clear to the people who

                                          the Committee not only responded to our          represent us in Washington. There is no

                                          advocacy, but also to the urgent message         mistake that our message has been heard;

                                          we delivered: people with ALS can’t              that our advocacy continues to make a

                                          afford to wait!                                  difference!

                                          The bill’s sponsor, Congressman Eliot            We will continue to keep you updated as

                                          Engel (D-NY) praised the work of The ALS         the ALS Registry Act moves to the House

  SAVE THE DATE: 2008                     Association and thanked The Association          floor. In the meantime, we encourage you

                                          and the Centers for Disease Control and          to continue to reach out to your U.S.
    ALS Advocacy Days                                                                      Senators using the online Advocacy Action
                                          Prevention for working closely with him to
    in Washington, DC                                                                      Center at You can also
                                          help advance the bill. In addition,
      will be held on                     Congressman Lee Terry (R-NE), the lead           register to become an ALSA Advocate and
    May 11-13, 2008.                      Republican sponsor of the bill, and other        receive regular email updates. <

State Advocacy Efforts Continue in PA
    dvocates in Pennsylvania have worked hard this year to            support a line-item for ALS in the budget. Thank you to
A   partner with state representatives to fund ALS programs.
Despite our numerous efforts and support from many members
                                                                      everyone who contacted their representatives regarding this
                                                                      important effort. We will keep up the fight!
of the legislature, we were not able to secure funding in this
fiscal year. However, we are encouraged by the tremendous             Plans are in the works for our third annual ALS Awareness Day
progress we have made so far, especially considering our state        in Harrisburg coming up in February 2008. If you have a
advocacy program was just launched last year. It is a                 connection to a state representative in PA, or if you would like
remarkable accomplishment to go from holding a small ALS              to get involved in ALS Advocacy on the state level, please
Awareness Day in the Capitol to having legislative supporters         contact Jenny Ruth at 215-643-5434, or
from each party in each Chamber agree to introduce and       <

                                                            1 - 8 7 7 - G E H R I G - 1                          9
ALS-0907-NL (10 5).qxd       10/11/07     3:03 PM     Page 10

       Upcoming Events                                                                                                       It’s not too
                                                                                                                             early to think
          HOT CHOCOLATE            March 13, 2008
                                                                                                                             about Holiday
          Currents Ballroom at the Adventure Aquarium                                                                        shopping…
          6:30 - 9:30 p.m.                                                                                                   Join The ALS Association
                                                                                Always one of our most popular               for an Evening of Giving
                                                                                events, Hot Chocolate will take              at the Oxford Valley Mall
                                                                                place on Thursday, March 13th
                                                                                                                             on Sunday, November
                                                                                in the new Currents Ballroom at
                                                                                the Adventure Aquarium in                    18th from 7:30 – 10:30
                                                                                Camden. Enjoy chocolate treats               pm. This private
                                                                                and sample chocolate martinis all            shopping event will help
                                                                                while exploring the Shark Realm.             us raise funds the 2008
                                                                                                                             Bucks County Walk to
                                                                                For more information call
                                                                                                                             D’Feet ALS to be held
                                                                                215-643-5434 or visit
                                                                                           April 12, 2008. The
                                                                                                                             event will feature
                                                                                                                             exclusive store discounts
                                                                                                                             throughout the mall,
                                                                                                                             family entertainment, food
                                                                                                                             sampling and more.
                                                                                                                             Tickets are $10 and can
                                                                                                                             be purchased through The
                                                                                                                             ALS Association.
                                                                                                                             Contact Julie McKeever
                                                                                                                             at 215-643-5434 or
                                                                                                                             for more information!

                                 THE ALS ASSOCIATION INTRODUCES                                   New Logo & Theme Line
                                     he ALS Association has unveiled a              “We recognized that The ALS Association had significantly grown
                                 T   dynamic new logo and theme line
                                 that underscore its leadership, vision
                                                                                    and advanced in its ability to serve the ALS community,” remarked
                                                                                    Jeff Snyder, vice president of communications. “To acknowledge
                                 and commitment in the fight against                and underscore that growth, it was time for the logo to advance too
                                 Lou Gehrig's Disease.                              - to better reflect our leadership, dedication and role as the
                                                                                    champion of the cause of people with ALS.”
       The new logo of The ALS Association - a hand touching a vibrant
       red-letter “A” - visually represents its unending, heartfelt pledge to       That dedication is exemplified in the new mission statement for
       fight on every front to improve life for those living with ALS, also         The Association: “To lead the fight to cure and treat ALS through
       known as Lou Gehrig's Disease. The visual identity reflects The ALS          global cutting-edge research, and to empower people with Lou
       Association's three focused areas of expertise and commitment:               Gehrig's Disease and their families to live fuller lives by providing
       research to find a cure, advocacy at the highest levels of                   them with compassionate care and support.”
       government, and comprehensive care and support services for all
       people living with Lou Gehrig's disease. To reflect The Association's        The Association provides localized patient care and family support
       sole focus, attached to the red A is a new theme line: “Fighting             in communities across the country through its nation-wide network
       Lou Gehrig's Disease.” The logo was developed in partnership                 of chapters. The new logo exemplifies the excellent, personalized
       with Minneapolis-based advertising agency, Campbell Mithun.                  care that our organization offers to those touched by ALS and the
                                                                                    work that is being done in research, advocacy and at all levels of
       The effort to develop the new brand began two years ago, as the              The Association. <
       ALS Association marked its 20th anniversary.
2007 Walks To D’Feet ALS®
Past Walks
To D’Feet ALS®
A new location and a whole new
feeling! Over 1,600 walkers enjoyed a
sunny, breath taking day at the Music
                                          Upcoming Walks To D’Feet ALS®
                                          2007 Greater Philadelphia
                                          Walk to D'Feet ALS®
                                          presented by McCarter & English, LLP
                                          Saturday, November 10th, 2007
                                                                                  2008 Bucks County
                                                                                  Walk to D'Feet ALS®
                                                                                  presented by McCarter & English, LLP
                                                                                  Saturday, April 12, 2008
Pier on the boardwalk for the 2007
                                          Valley Forge Military Academy           Oxford Valley Mall
Ocean City Board…Walk to D’Feet ALS.
                                          and College                             Langhorne, PA
Almost 80 teams and individuals           Wayne, PA
walked for 88 people and raised over                                              Registration: 7:30 a.m.
                                          Registration: 10:00 - 11:00 a.m.        Walk Starts: 8:30 a.m.
$200,000 to support patient services
                                          Walk Starts: 11:00 a.m.
and research for The ALS Association,                                             Don’t miss out on the first walk of the
Greater Philadelphia Chapter. A           For more information about forming      new year! For more information please
special thank you to the Goudie Family,   a team or joining the Walk committee,
                                                                                  contact Julie McKeever at 215-643-5434
the City of Ocean City, Presenting        contact Allison Walker at
                                                                                  ext. 26 or
Sponsor’s CertainTeed and ShopRite        1-877-GEHRIG-1 or e-mail at
and their Customers.   Plus countless
other sponsors and volunteers! Be on
the look out for the 2008 date!

    Presenting Sponsor of the Ocean City Board…
                Walk to D'Feet ALS®                               Presenting Sponsor of the Greater Philadelphia
         — CERTAINTEED CORPORATION &                                           Walk to D'Feet ALS®
        SHOPRITE AND THEIR CUSTOMERS                                   — MCCARTER AND ENGLISH, LLP

                                               Hoyle, Fickler, Herschel,
                                                    & Matthes, LLP                           Ride-Away
  Air Products & Chemicals, Inc
                                              Kyowa Pharmaceutical, Inc              Scherline and Associates,
           Asbury United
                                                                                         Attorneys at Law
         Methodist Church                       Lehigh Valley College
       Atlantic City Electric                    Lehigh Valley Dairies                Smooth Jazz WJJZ 97.5
        Brinker Capital, Inc                    Lehigh Valley Hospital                     Target Select
         Commerce Bank                           and Health Network                     The Martin Family
   Fox Subacute Management                      McMahon Agency, Inc                  Turkey Hill Minit Markets
 GRISWOLD SPECIAL CARE, Inc.                    Rave Motion Pictures                   Unique Industries, Inc
                                               William and Kelly Rambo                         WLEV

             Our sponsors help make our Walks to D'Feet ALS® a success!
                             To learn more about the benefits of becoming a walk sponsor,
           please contact Allison Walker or Julie McKeever at 215-643-5434 or toll-free 1-877-GEHRIG-1.

                                                    1 - 8 7 7 - G E H R I G - 1                     11
ALS-0907-NL (10 5).qxd      10/11/07     3:03 PM     Page 12

       SaVes4ALS hits another one out of the park this year!
       With 17 sponsors for the 2007 baseball season, the program has raised over $100,000 in two
       seasons. SaVes4ALS recruits corporations to pledge a donation to our Chapter for every “save”
       recorded by the Phillies’ bullpen. The program was developed in 2006 by Suzanne Bruce and
       Ellen Brosso, both Vice Presidents of Corporate Synergies Group, Inc., a benefits consultant and
       brokerage firm based out of Mount Laurel, NJ.

        At the program’s Sponsor
        Appreciation Event in August, three
        extraordinary organizations were
        recognized for their contributions.

        JOHNSON AND TOWERS, a family-owned retailer
        of diesel engines and transmissions, was the first
        to support the Saves program when it was just an
        idea, the first to sign up as a sponsor, and the
        first to send in their check every year. “When
        Suzanne Bruce and Ellen Brosso approached me
        to be a corporate sponsor for the SaVes4ALS program I thought      Gary Johnson and Stan Gawal of TUBE METHODS are big
        it would be a perfect way to remember my Aunt who passed           supporters of SaVes4ALS. “My involvement with the
        away after a 3 year battle with ALS. It gave me great              SaVes4ALS program came about by seeing both Suzanne and
        satisfaction knowing the donations go to improve the quality       Ellen's passion and energy to raise money that would be used to
        of life for people with ALS and their families. I look forward     treat and possibly help find a cure for a disease that has affected
        to being a part of the SaVes4ALS program for many years to         many people as well as close friends of mine,” said Gary
        come,” said David Johnson, CFO of Johnson and Towers.              Johnson, President. Tube Methods has more than 60 years of
                                                                           experience in producing top of the line tubing for industries such
        THE RASCAL COMPANY has made a significant impact to the            as automotive, medical, aerospace and thermonuclear. <
        quality of life of patients stricken with ALS by their generous
        donation of 12 Rascal Power Wheelchairs through the               Top Left: (left to right) Ellen Brosso, David Johnson (CFO, Johnson and
        SaVes4ALS program. "The Rascal Company is proud to help           Towers), Suzanne Bruce, Shelley Hink (Manager, Johnson and Towers)

        people with mobility challenges improve the quality of their      Top Right: Gary Johnson (President, Tube Methods) with Suzanne Bruce
        lives with our premium Rascal Scooters and Powerchairs. We        of Corporate Synergies.
        are honored to work with SaVes4ALS and the Greater
                                                                          Bottom Right: (left to right) Jim Day (Electric Mobility), Suzanne Bruce
        Philadelphia ALS Chapter because of the dedication and            and Ellen Brosso (Vice Presidents of Corporate Synergies and Co-
        commitment you have for accomplishing your Missions," said        Founders of SaVes4ALS), Michael Flowers (President of Electric Mobility
                                                                          - The Rascal Company).
        Michael Flowers, Chairman.
Scranton/Wilkes Barre
Yankees Autograph
Party & Auction for ALS

    n July 28th, more than 400 people came out to PNC Field to meet their favorite Scranton/Wilkes Barre Yankees players and help
O   raise over $34,000. The day included a silent and live auction of sports memorabilia and gift certificates to local attractions,
businesses, hotels, restaurants and more. A jersey auction was held that same night during the Yankees versus the Rochester Red
Wings game. Thank you to the Yankees organization, the players, Mike Cummings, the Novitski Family, Cindy Brozyno and all the
volunteers for their continued dedication to ALS!

Second Annual Oggie Labor Day Golf                                   Sandy Kinderman
Outing To Knockout ALS                                               Memorial Golf Tournament
FRIDAY, AUGUST 31ST                                                  FRIDAY, SEPTEMBER 10TH
This outing took place at Centerton Country Club on August           This 1st annual golf outing raised over $113,000 for ALS
31st in New Jersey and raised over $5,000! A special thank you       Research in honor of Sandy Kinderman. It was held on September
to Robert Ogbin who organized the event.                             10th, with over 100 golfers, at Green Valley Country Club in
                                                                     Lafayette Hill, PA. Thank you to Judy Kinderman and the Friends
                                                                     of Sandy Kinderman committee, especially: Barbara and Bob
Michael Bartone Memorial Golf                                        Dilsheimer, Renee and Rob Dubin, Denise and Michael Krekstein,
Tournament and Dinner Dance                                          Sandi and Max Paul, Susan and Jules Seshens, Nancy and Peter
FRIDAY, SEPTEMBER 7TH                                                Wood, Sherrie and Morris Willner.
108 golfers teed it up on September 7th at Arrowhead Golf
Course. The sixth annual tournament was another fabulous day
of golf, camaraderie, fun and fundraising in memory of Michael
                                                                     Shop and Share with Lilly Pulitzer
                                                                     WEDNESDAY, SEPTEMBER 19TH
Bartone. The Dinner Dance the next night was sold out, as
                                                                     On the evening of September 19th the Lilly Pulitzer store in
usual. Together these two events continue Michael's fight
                                                                     Suburban Square in Ardmore invited everyone to come out and
against ALS and reminded those in attendance, “His battle is
                                                                     support the ALS Association with an evening of shopping,
not lost unless we quit.”
                                                                     snacking and cocktailing! With a wonderful spread of snacks,
                                                                     beverages and 10% of every purchase being donated it was a
Gino's Race                                                          wonderful evening for everyone! A special thanks to Anne Hall,
SUNDAY, SEPTEMBER 9TH                                                Susan Candello and her staff for all their help and support.
On September 9th the Annual Gino's Race Duathlon was held
to benefit Greater Philadelphia Chapter of The ALS Association.
This is the 7th year of this race, which includes a 2 mile run,
                                                                     7th Annual KAK Cup Golf Outing
14 mile bike, and ends with another 2 mile run at Cordours           FRIDAY, SEPTEMBER 21ST
State Park in Hanover, PA. Over 120 participants, came out in        This year’s golf outing took place on September 21 at Makefield
memory of Gene Gladfelter. A special thank you to Jonathon           Highlands Golf Course in Yardley, PA. The event, in honor of Karen
Sprenkle, Rod Young and all the volunteers for their hard work       Barone, raised almost $12,000! A special thank you to Cyndee
on this great event!                                                 Ward and all the volunteers for all their hard work on this event.

                                                        1 - 8 7 7 - G E H R I G - 1                               13
ALS-0907-NL (10 5).qxd      10/11/07    3:03 PM     Page 14

      Patient Services
      Holiday Party

      are always surprises ahead so save the date!

      We look forward to having our annual Holiday party at the
      Radisson Hotel in Trevose on Sunday, December 2nd. There
                                                                              AFTD/ALS Joint Update
                                                                              FRIDAY, NOVEMBER 16TH

                                                                              The Greater Philadelphia Chapter will be collaborating with
                                                                              the AFTD Association to hold our annual Research Symposium
                                                                              on Friday, November 16th. at the Hilton on City Line Avenue

      For further information, please contact Mary Dittmar, Patient           Our focus will be to address the impact of fronto temporal
      Services Clerical Assistant at or             dementia on ALS patients and their families. The
      215-643-5434.                                                           presentations will include discussions about FTD, ALS,
                                                                              genetic implications, coping strategies and resources. For
                                                                              more information or to RSVP, contact Catherine Pace-Savitsky,
      Nurturing the Nurturer:                                                 866-507-7222 or
      Caregiver's Day
      SUNDAY, NOVEMBER 4, 2007
                                                                              Caregiver Skills Day
      The Chapter's annual salute to Caregivers will take place on            JULY 27, 2007
      Sunday, November 4, 2007 at the ACE Center in Lafayette Hill,
      PA. This event offers an opportunity for caregivers to network          Caregiver Skills Day was held on July 27, 2007 at the Fort

      with each other, attend support sessions, and be pampered with          Washington Hotel and Conference Center.

      massages, facials, and much more! Respite care can be provided          Over 30 individuals attended the program which provided
      if needed so the primary Caregivers of the PALS can attend.             hands on information regarding caregiving skills. A variety of

      For information, please contact Alisa Brownlee at 215-631-              durable medical equipment was on display for caregivers to

      1877 or                                       learn about and try out!

          Resource Groups
              his is a general listing of our Resource Groups. We warmly invite people with ALS, and their families and
          T   friends, to attend. Please call the contact person for each group to confirm actual dates, or you may request
          to be placed on the Resource Group mailing list. This mailing is distributed monthly and lists upcoming dates,
          times, and other important information. Also, be sure to RSVP to the facilitator, if specifically requested.

                 Bereavement - Ambler, PA                 Harrisburg - Hershey, PA              Philadelphia - Bala Cynwyd, PA
                 A five-session series is available       Info.: Judy Lyter,                    Info.: Karen Dawson-Haines
                 for people who have lost someone         (717) 657-5352                        (215) 487-4519
                 to ALS in the past 2 years.
                 Info. and RSVP:                          Lehigh Valley - Allentown, PA         South Jersey-
                 Jennifer Klapper,                        Info.: Wendy Barnes,                  Egg Harbor Township, NJ
                 (215) 726-8724                           (610) 282-5904                        Info.: Stephanie Hand-Kowchak,
                                                                                                MSW, LSW
                 Caregivers and Family Members-           North Central - Danville, PA          (609) 457-9261
                 Ambler, PA                               Info. and RSVP:
                 Info. and RSVP:                          Peggy Slusser, PhD, RN, CS,           Trenton - Lawrenceville, NJ
                 Karen Dawson-Haines,                     (570) 793-3906                        Info.: Cathe Frierman,
                 (215) 487-4519                                                                 (609) 394-3556
                                                          North East - Moosic, PA
                 Delaware - Wilmington, DE                Info. and RSVP:                       Monmouth/ Ocean County-
                 Info: Wendy Strowhouer, RN               Peggy Slusser, PhD, RN, CS,           Red Bank, NJ
                 (302) 547-8482                           (570) 793-3906                        Info: Patricia Schaeffer, RN
                                                                                                (732) 450-2677
                                                                                                            IN MEMORIAM
                                                                                                            John Arnold
                                                                                                            James Beitler
                                                                                                            Janet Bigenis
 Linvilla                                                                                                   Lynda Boas
 Orchards                                                                                                   Horace Brobst
 SUNDAY,                                                                                                    Louis Burke
 SEPTEMBER 30TH                                                                                             Michael Capello
                                                                                                            Alexis Capriotti
 Linvilla Orchards had much to offer to the patients and family members that attended the event
                                                                                                            Stephen Coffin
 on Sunday, September 30, 2007. Over 53 people attended on a beautiful sunny day and joined
                                                                                                            Rose Dement
 in on the fun of face painting, a marshmallow roast and other activities the Orchards had to offer.
                                                                                                            April Dickerson
                                                                                                            Fred Didomenico
                                                                                                            Janice Dottavio
                                                                                                            James Fickes
                                                                                                            Luann Fitz
                                                                                                            Marie Flannelly
                                                                                                            Samuel A. Glick
                                                                                                            Leola Heintzelman
                                                                                                            Joan Jamin
                                                                                                            Luther Jones
                                                                                                            Evelyn Jordan
                          PROFESSIONAL STAFF                                                                Donald Kenny
                                                                                                            Stanley Kenzler
 EXECUTIVE DIRECTOR                STAFF NURSE                        MANAGER OF
 James V. Pinciotti                Christine D’Angelo, RN, BSN        SPONSOR RELATIONS                     Joan Long
                                                                      Roxanne Walter
                                                                                                            Barbara Markley
 DIRECTOR OF                       SOCIAL WORKERS
 PATIENT SERVICES                  Wendy Barnes, MSW, LSW             ADMINISTRATIVE STAFF                  Phillip May
 Brenda Edelman, LCSW, BCD         Shelley S. Hill, MSW, LCSW         Mary Dittmar
                                                                      Patient Services Clerical Assistant   Beverly McCarr
                                   Susan Schwartz, ACSW, LSW
 DIRECTOR OF ADMINISTRATION                                                                                 Herman Miller
                                                                      Nilda Mallatratt
 Jeanne A. Johnson                 EVENT MANAGER                      Patient Services Assistant            Angelo Monzo
                                   Allison Walker
 CHIEF DEVELOPMENT OFFICER                                            Mary Sharp                            Arlene Moyer
 Jeff Cline                        EVENT COORDINATOR                  Receptionist/Office Assistant         Marvin Newsome
                                   Julie Morrison McKeever
 MENTAL HEALTH NURSE               Marianne Mancini                   Maryann Vagnoni                       Timothy O'Neill
 Jennifer Klapper, APRN, BC                                           Executive Assistant
                                                                                                            LisaJo Pappalardo
                                   EVENT ASSISTANT
                                   April Haas                         TRANSPORTATION VAN DRIVERS            Anna Petruzzelli
                                                                      John Conner
                                   DEVELOPMENT COORDINATOR
                                                                      Thomas R. Mitchell                    Salvatore Ricchetti
 Alisa Brownlee, ATP                                                  Gerry Neal
                                   Joan Borowsky                                                            James Roderick
 COMMUNICATIONS MANAGER                                               FINANCE STAFF
                                   SENIOR INFORMATION
                                                                                                            Ronald Rodgers
 Jenny Ruth                                                           Erin Farrell
                                   TECHNOLOGY MANAGER                 Accounts Payable Specialist           Arthur Rothrock
 REGIONAL NURSE                    Nora Isaac
                                                                      Nichole Hayward                       Susan Semuta
                                   DATABASE COORDINATOR               Steve Holt                            Mary Jo Shipe
 Gail Houseman, RN, APRN, MSN
                                   Heather Pecharo                    Accounts Receivable Clerks
 Paula Rich, RN, MSN
                                                                                                            Renee Simmons
 Sue Walsh, RN, MSN, CS
                                                                                                            Evelyn Thomas
                                                                                                            Richard Tressler
 Volunteers                                                                                                 Joseph Volpe
We Couldn’t Do It
  Without Them!

                                                             1 - 8 7 7 - G E H R I G - 1                  15
ALS-0907-NL (10 5).qxd    10/11/07    3:03 PM    Page 16

   Fall & Winter 2007
                                     CALENDAR OF EVENTS                             SAVE the DATE
     November                                                                       for these
     14th Annual
                                         An Evening of Giving
                                                                                    2008 EVENTS
     Nurturing the Nurturer              Oxford Valley Mall,
     The ACE Center,                     Langhorne, PA                              March 13, 2008
     Lafayette Hill, PA                                                             HOT CHOCOLATE
                                                                                    Currents Ballroom at the Adventure Aquarium,
                                                                                    Camden, NJ
     14th Annual Curt Schilling
     ALS Golf Outing
     Green Valley Country Club and                                                  April 12, 2008
     Whitemarsh Country Club, PA.                                                   BUCKS COUNTY WALK TO D'FEET ALS®,
                                         Patient and Family
     10th                                Holiday Party                              Oxford Valley Mall, Langhorne, PA
     2007 Greater Philadelphia           Radisson Hotel,
     Walk to D'Feet ALS®                 Trevose PA
     Valley Forge Military Academy                                                  May 11-13 2008
     and College,                                                                   NATIONAL ALS ADVOCACY DAYS,
     Wayne, PA                                                                      Washington, DC
     AFTD/ALS Joint Update
     Hilton Hotel,                                                                  May 17, 2008
     City Avenue,                                                                   SEASIDE BOARD...WALK TO D'FEET ALS®
     Philadelphia, PA                                                               Seaside Heights, NJ


         This Issue We
                                                                    • ShopRite® • McCarter & English, LLP
        THANK                                                           • Independence Capital Partners

        &SALUTE                                                     • Wolf, Block, Schorr & Solis-Cohen LLP

                                 The ALS Association (Lou Gehrig’s Disease)
                                 Greater Philadelphia Chapter                                                            NON-PROFIT ORG. U.S.
                                 321 Norristown Road, Suite 260                                                                POSTAGE
                                 Ambler, PA 19002-2755
                                                                                                                           PERMIT NO. 215
                                 phone 1-877–GEHRIG–1                                                                   WEST CHESTER, PA 19382

    Our mission is to lead the fight to cure and treat
     ALS through global, cutting-edge research, and
      to empower people with Lou Gehrig's Disease
    and their families to live fuller lives by providing
       them with compassionate care and support.

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