Spring 2009(2)Scleroderma newsletter

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					                                                                                                                                                                                                    Scleroderma Source
                                        THERE IS NO CURE FOR SCLERODERMA. TOGETHER WE CAN CHANGE THAT!

                                                                                                                              NON-PROFIT PRESORT
                                                                                                                                 U.S. POSTAGE
                                                                                                                                      PAID                                                                    There Is No Cure For Scleroderma.
                                                                                                                                  PERMIT #3
                                                                                                                                SOUTHFIELD, MI                                                                 Together, We Can Change That!
  30301 Northwestern Highway
  Suite 300                                                                                                                                                                              SPRING 2009 ISSUE                            www.scleroderma.org/chapter/michigan
                                                                                                                                                          BOARD OF DIRECTORS
  Farmington Hills, MI 48334
Phone: 248-865-7259                                                                                                                                                 President                     Do You Need Financial Aid to Buy Medicine?
Fax: 248-865-7523                                                                                                                                                 Ilene Ringle
E-mail: MIChapter@scleroderma.org                                                                                                                                                         RX Assistance programs            advocates warn consumers to           patients with certain diseases,
                                                                                                                                                                Vice President                                              steer away from sites that            such as the Chronic Disease
                                                                                                                                                               Barbara Donohoe               As the slowing economy         charge much more than that.           Fund and American Kidney
                                                                                                                                                                                         swells the ranks of the            Despite the lengthy                   Fund.
          We’re On the Web!                                                                                                                                       Treasurer              unemployed -- and uninsured        paperwork, advocates say
www.scleroderma.org/chapter/michigan                                                                                                                        Richard A. Green, CPA        -- more people are getting         most patients can tackle the              Many drug-company
                                                                                                                                                                                         help from prescription-drug        application process on their          assistance programs were
                                                                                                                                                                  Secretary              assistance programs normally       own.                                  launched decades ago, partly
                                                                                                                                                              Mark Saidman, DDS          aimed      at    providing                                               for public-relations efforts.
        OUR MISSION                                                                                                                                                                      medications to the poorest             On ce a patient i s               Today they also serve as a
                                                                                                                                                                DIRECTORS                Americans.                         approved, medicines can take          marketing tool, particularly as
The mission of the Scleroderma                                                                                                                                                                                              from two days to a month to           companies struggle to come
Foundation is threefold: To                                                                                                                                     Lisa M. Bochenek             Application forms for          arrive and are usually sent to        out with new products and
provide educational and                                                                                                                                        Linda Hendrickson         many programs are available        the patient's doctor or               consumers have trouble
emotional support to people                Send your e-mail address to                                                 If you prefer to receive this               Lee Maniago
                                          MIchapter@scleroderma.org so                                                  newsletter electronically,                                       from the drug companies or         pharmacy. Many companies              paying for them. Indeed, the
with scleroderma and their                 we can keep you abreast of                                                       please e-mail us at
                                                                                                                                                               Sharon L. Noechel         from patient-advocate Web          also require patients to apply        number of total U.S.
families; to stimulate and                                                                                             MIchapter@scleroderma.org                  Dennis Pulver
                                                       our                                                                                                                               sites, including Needy-            for approval every three to           prescriptions filled was down
support research designed to                  programs and events.                                                         or call (248) 865-7259              Elena Schiopu M.d.
                                                                                                                                                                                         Meds.org, as well as from          six months. They may not              in the second quarter, the
identify the cause and cure of                                                                                                                             Patricia Thomas, PhD, RN
scleroderma as well as improve
                                                                                                                                                                                         pparx.org, the site of             provide assistance for all            first decline since 1997,
                                                                                  Want off the mailing                                                           Annie Q. Valle
methods of treatment; to                                                         list? Just call the office                                                                              PhRMA's Partnership for            drugs or dosages.                     according to market
enhance the public’s awareness                                                        to let us know!
                                                                                                                                                           HONORARY BOARD                Prescription Assistance. The                                             researcher IMS Health. By
                                                                                                                                                                                         sites generally guide patients         Most states sponsor a             providing drugs free while
of this disease.
                                                                           Scleroderma Foundation Michigan Chapter                                             Peggy B. Graham           to specific programs, and          handful of programs that also         patients have no coverage or
                                                                           30301 Northwestern Highway Suite 300                                             Carole Larson Wendzel        some may offer references to       help low-income people who            are down on their luck,
         WHAT IS                                                                Farmington Hill, MI 48334                                                                                local community groups that        aren't poor enough to qualify         companies hope consumers
      SCLERODERMA?                                                                                                                                                 STAFF                 help people fill out the           for Medicaid. These include           continue on those brands
                                            Benefactor…..$1,000           Sponsor…..$ 250                     Supporter….. $50          Other$_____                                      applications.                      specific programs for AIDS            once they have insurance or a
Scleroderma, or systemic                    Patron…..    $500             Donor….. $100                       Contributor…..$30                               Executive Director                                            patients, children or the             better financial footing.
sclerosis, is a chronic                                                                                                                                      Laura Dyas LSW, MA              Other online services ask      elderly. The patient-advocate
connective tissue disease              Name: ____________________________________________________________________________                                                                for an administration fee of $5    Web sites provide the
generally classified as one of the                                                                                                                        Patient Services Coordinator   to $10 to fill out applications,   quickest overview of what's             Source: Taken from a larger
autoimmune rheumatic diseases.         Address: ___________________________________________________________________________                                         Carol Hilf           which are refunded if the          available state-by-state, as well      article in The Wall Street Journal
The word “scleroderma” comes                                                                                                                                                             patient is rejected. But patient   as from foundations that help
from two Greek words:                  City:______________________________________ State: ___________________ Zip: ___________                                Executive Assistant
“sclero” meaning hard, and                                                                                                                                      Janus Landrum
“derma” meaning skin.                  E-mail: ____________________________________________________________________________                                                                                         2009 CALENDAR OF EVENTS
Hardening of the skin is one of
the most visible manifestations             Please renew my membership dues, $25.00 for 2009.                  Please enroll me as a new member, $25.00    MEDICAL ADVISORY
of the disease. The disease has                                                                                                                                                           Sunday, May 3        Sunday, June 7         July 17-19           Thurs. Aug. 6            Sunday, Oct. 11
                                       This gift is made    in honor of                                                                                         BOARD
been called “progressive                                                     in memory of ________________________________________.                                                       Patient Education                                               Patient Education
                                                                                                                                                                                                                 30th Annual            National                                     Hope, Health &
systemic sclerosis,” but the use                                                                                                                                                                 Day                                                             Day
                                                                                                                                                              Henry W. Lim, M.D.
of that term has been                  I would like to contribute on a monthly basis. Please send me envelopes. I will contribute                                                                               Walk and Run          Conference                                           Healing
                                                                                                                                                           Richard W. Martin, M.D.        MI Chapter Office                                              MI Chapter Office
discouraged since it has been              $________ per month for 2009 to further the Michigan Chapter’s mission.                                        Vallerie V. McLaughlin, M.D.                           Detroit Zoo            St. Louis                                       Conference
found that scleroderma is not
                                                                                                                                                           Tammy Clark Ojo, M.D.             1:00—3:00                                                          6:30-8:30
necessarily progressive. There is      Credit Card Information:                                                                                                                                                 Royal Oak, MI                                                          Park Place Hall
                                                                                                                                                            Melvyn Rubenfire, M.D.         Scleroderma and
also much variability among            Number: ___________________________________________________________________                                                                                                                                        Scleroderma 101
                                                                                                                                                               Earl Rudner, M.D.                                                                                                     Dearborn– 8-3:00
patients.                                                                                                                                                                                    Related Tests
                                                                                                                                                             Mark Saidman, D.D.S.
What scleroderma is not-               Expiration date: _________________________ CVD Three Digit Code: _________________                                      Delfin Santos, M.D.
Scleroderma is not contagious,
                                                                                                                                                              Elena Schiopu, M.D.               30301 Northwestern Highway, Suite 300 Farmington Hills, MI 48334
it is not infectious, it is not        Signature: __________________________________________________________________                                          Lisa Zemens, D.D.S.         Tel: (248) 865-7259  Toll Free: (800)716-6554  MIchapter@scleroderma.org
cancerous or malignant.
 Page 2                                                                                        Scleroderma Source                                                                                           Page 11


                                                                                                                                                           Scleroderma Foundation Michigan Chapter
                                         FROM THE DESK OF THE DIRECTOR….                                                                                   30301 Northwestern Highway Suite 300
                            Greetings!                       2009 but the next 10 years.     being launched. T he                                               Farmington Hill, MI 48334
                                                             At my interview I detailed      success of this campaign
                            I am Laura Dyas, the new         some ideas I have for the       will enable us to reach more
                            Executive Director at the
                            Michigan Chapter. I am
                                                             Chapter and in        future    patients,     create     better                           Detroit Tiger Tickets Order Form
                                                             columns I will be sharing       educational programs and
                            extremely honored to be
                            representing all of you and
                                                             those ideas with you.       I   raise more funds for the                                      Sunday, August 16, 2009
                                                             encourage you to share your     much needed research to
                            want to assure you that          ideas with me also because      find a cure for this disease.
                            even though I do not have
                            scleroderma myself my
                                                             the Michigan chapter
                                                                                             I thank all of you who have       Personal Information:
                                                             belongs to all of you and
                            passion and dedication           y o u r     i n p u t     i s   supported the Michigan
                            serve as the motivation for      immeasurable to me. I want      Chapter in the past and ask
                            which I will lead this                                           those of you who have not         Name: _____________________________________________________________________________________
“I encourage you            organization on a daily
                                                             to hear your voice and learn
                                                                                             made a donation to consider
                                                             what is important to you.
                            basis.                                                           doing so now.        Please       Address: ____________________________________________________________________________________
to share your ideas                                          Many of you will be
                                                                                             remember that no check is
                             I have been in the non-profit   contacted over the next few
                                                                                             too little right now and if
   with me also             sector for 19 years and          months and asked a series
                                                                                             everyone reading this gave        City:___________________________________________ State: ___________________ Zip: _______________
                            know first hand the value of     of questions       regarding
                                                                                             $10 a month we could meet
    because the             having a leader who leads        our current programs and
                                                                                             and exceed our budget in
                            with heart and soul.             services and what other                                           E-mail: _____________________________________________________________________________________
                                                                                             2009. Won’t you consider a
Michigan chapter            I am married to Steve Dyas
                                                             programs you would like to
                                                                                             donation today? You could
                                                             see us add. I encourage                                           Telephone: ( _______________ ) ________________________________________________________________
                            and have been for almost 25                                      make this donation by
 belongs to all of          years.      We     reside in
                                                             you to share your thoughts
                                                                                             returning       pop   cans,
                                                             with us so we can better our
                            Plymouth       Township and                                      collecting spare change or
        you .”              have two children, Kristina
                                                             services to meet your
                                                                                             giving up that trip to your
                                                             needs.
                                                                                             favorite coffee shop. Help                         Please order me: _____________________ tickets* at $ 30.00 each
                            who is 23 and Derrick who
   Laura Dyas               is 21. For those of you who      The Michigan Chapter is         the Michigan Chapter touch
Executive Director          attend events you will surely    currently working with a        the lives of those afflicted                       Enclosed is my check for $ ________________________________.
                            meet my family       because     marketing firm in Troy, MI,     with scleroderma. Help us                                    * Tickets will be mailed to you in advance
                            hiring me meant you hired        ICMS      to    create     a    make a real difference in
                            the whole Dyas family and        marketing and awareness         2009 by creating new
                            all of my family volunteer at    campaign that will assist us    programs        and   more
                            all of our events.               in    obtaining      more       awareness.                        Credit Card Information:
                                                             awareness           about
                            I have many goals and            scleroderma.       This is      Hope to see you at the 30th
                            expectations of where I          something that is needed        Walk and Run. Sign up
                            desire    the   Michigan         desperately and I look          today!                            Number: ___________________________________________________________________________
                            Chapter to head in not only      forward to this   campaign
                                                                                                                               Expiration date: _________________________________ CVD Three Digit Code: _________________

                            2009 CONFERENCE HEADS TO ST. LOUIS, JULY 17-19!                                                    Signature: _________________________________________________________________________

                               The     Scleroderma               The      conference         part of this educational
                            Foundation is pleased to         registration information will   experience.
                            announce that the 2009           be forthcoming. As more
                            National        Patient          information regarding the         Online hotel registration
                            Education Conference will        2009      conference      is    now available at http://
                            be held in beautiful St.         received, we will post it       stlouisriverfront.hyatt.com/
                            Louis, Missouri, at the          promptly, on our website        g r o u p b o o k i n g /
 Come join the Michigan
   Chapter members at
                            Hyatt Regency St. Louis          so check back often.            stlrsscfd2009.
the 2009 National Patient   Riverfront, 315 Chestnut
  Education Conference      Street,     St.    Louis,          The goal this year is to
       in St. Louis         Missouri,       63102,           have 30 members from the
                            Tel: 314-655-1234.               Michigan Chapter attend
                                                             so please consider being a
Page 10                                      Scleroderma Source
                                                                  SPRING 2009 ISSUE                                                                                      Page 3


          Take Me Out To The Ballpark                                                              CAROL CARES….
          To Celebrate the 30th Anniversary                           Don’t wait for your ship
                                                                            to sail in—
                                                                                                   support group exists near
                                                                                                   where you live. Well, may I
                                                                                                                                      not currently a support
                                                                                                                                      group in that area we will try
              of the Michigan Chapter                                   Swim out after it!         suggest that just perhaps you
                                                                                                   may do exactly what others
                                                                                                                                      and establish one.
                                                                                                                                      remember, this is your
                                                                                                                                                                Just



        Sunday, August 16, 2009
                                                                  Support Groups—we would          have done before you? I            Foundation and we must
                                                                  love to have the perfect one     have a sampler      hanging in     have your support to help
                                                                  for you that is right in your    my kitchen that has been an        make it run.
                                                                  neighborhood! For a few of       inspiration and a reminder to


      Tigers vs Kansas City Royals
                                                                  you, that is exactly what you    me for almost as long as I can         We are all in this together!
                                                                  have.      You have found a      remember. This is what it
                                                                  group and it fits your           says: Don’t wait for your
                                                                  individual needs. Good for       ship to come in. Swim out

    Game Time 1:05 p.m. Section 334 Rows 1-10                     you! For the rest of you,
                                                                  are you wait ing f or
                                                                                                   after it! If you feel you can
                                                                                                   be a leader and if you are
                                                                                                                                                                               “Just
                                                                                                                                                                         remember, this
                                                                  something to happen? Do          interested in starting or re-
                Ticket Price $ 30.00                              you long to find a caring
                                                                  atmosphere where a group
                                                                                                   starting a support group in
                                                                                                   your area WE WOULD
                                                                                                                                                                              is your
                                                                                                                                                                         Foundation and
     Includes $8.00 tax deductible contribution                   of people share your
                                                                  concerns about scleroderma
                                                                                                   LOVE TO HEAR FROM
                                                                                                   YOU!
                                                                                                                                                                          we must have
                                                                                                                                                                         your support to
                                                                  and          receive practical
                                                                  guidance in terms of coping          Don’t worry; we won’t                                              help make it
                                                                  with specific problems?          leave you out there all by                                                  run.”
                                                                  Where       can you receive      yourself. We will support
                                                                  practical guidance in terms of   you and help in any way
                                                                                                                                                                           Carol Hilf
                                                                  coping with specific problems    possible to make your efforts                                         Patient Services
                                       Sign Up Today!             and learn that others have       a success. Pick up the phone                                           Coordinator
                                                                  had similar experiences and      a n d c a l l o u r of f i c e :
                                  Limited Tickets Available       feelings? For many of you, an    248-865-7259 or email me:
                                  Must Purchase By July 1st       existing support group has       chilf@scleroderma.org and
                                                                  met your needs and you           let’s chat. If you don’t want
                                                                  know the positive impact         to lead but would be willing
                                                                  that group has had on your       to help, let us know about
                                                                  life. There are many, how-       that too! If enough interest
                                                                  ever, who have not had that      is shown in a certain location
                                                                  opportunity because no           within the state and there is



                                                                                             SCLERODERMA STORE
                                                                  The Michigan Chapter has         •    Golf balls with logo          •     Beach towel with logo
                                                                  several new items for sale            ($7 sleeve/ $28 box)                ($7)
                                                                  in their store and will be                                          •     White baseball hat
                                                                  profiling them soon on a         •    New navy hooded pull-
                                                                                                                                            with logo and name
                                                                  new web site where                    o v e r s    w i t h
                                                                                                                                            ($10)
                                                                  purchasing items will soon            thermal      lining
                                                                                                        S-XL ($30) 2XL-3XL            •     Blue tank tops with
                                                                  be much easier.
                                                                                                        ($35)                               logo ($5)
                                                                  New and old items include:                                          •     Tote bag with logo
                                                                                                   •    Travel    coffee    mugs            ($7)
                                                                  •      A computer mouse               ($8)                          •     White short sleeve
                                                                         pad      with     the
                                                                                                   •    Umbrella     with    logo           shirts with logo ($3)
                                                                         scleroderma logo ( $5)
                                                                                                        ($7)                          •     Bracelets ($2) large
                                                                  •      Magnets         with                                               ($1) small
                                                                         scleroderma logo (.50)
                                                                                                                                                                                                                     Page 9
Page 4                                                                                        Scleroderma Source                 SPRING 2009 ISSUE                                                         Page 9



                                    CONRAD’S CARE GIVING CORNER….
                          Why A Caregivers                those that we are caring for,   opinion, are therapeutic and
                           Support Group?                 but sometimes things can get    will help us to stay healthy so
                                                          to be somewhat stressful. I     that we can in turn continue
                                                          am blessed because I have a     to take care of those that we
                                                                                                                                      Benefiting the Scleroderma Foundation Michigan Chapter
                      Scleroderma has affected my
                      children, grandchildren,            good level of support from      are caring for.
                      parents, in laws, friends and       my friends and family. We
                      extended family for over 20         have a large family on both     I feel that the Caregivers             Sunday, June 7, 2009
                      years. On a daily basis we          sides. Some of us may not       Support group can serve as
                      have watched          how this      have that type of support.      that type of an outlet for
                      disease has impacted the one        Some of us may want to talk     some us that may not have
                                                          to someone when we are          the support from family that I                                                                                              Fun-Filled
                      person we all love and
                      admire so much, my wife             feeling down and we cannot      have been fortunate to have.                                                                                                Activities
                      Annie. Daily we struggle with       discuss some of our
                                                          concerns with the loved ones
                                                                                          If you or any of your family           7:00 a.m. - 12:30 p.m.
                      the knowledge that there is                                         members want to join us,
                                                          that we are caring for, so we   please come to our meetings                                                                                               Live Auction
“As caregivers all    little we can do to help her.
                      When our parents were still         end up keeping that stress      held at the Scleroderma
                      alive after Annie was               within us. I am not a doctor,   office on the third Thursday                                                                                              Silent Auction
of our efforts go
                                                          but I do know that we don’t     of the month at 6:30 in the
                      diagnosed, they too were
                                                          need any extra stress in our    evening.     You would be              Detroit Zoo, Royal Oak
 toward trying to     very surprised with the way
                      that Annie had changed, both        lives. Many of us may feel      surprised to see how uplifting                                                                                            KidZone with
   make life as       visually and physically.            that we would be betraying      it can be for you, as well as                                                                                             Games and
                      Annie used to be very               our loved ones if we were to    indirectly, for your loved                                                                                                Clowns
simple as possible    athletic, playing softball in the   go to these types of meetings   ones.
                      summer time and Wally ball          and have some discussions                                                Entry Fees for 30th Walk and Run:                                                Touch Down
for those that we     or volley ball in the               with strangers or non-family    I was asked by staff to write                                                                                             Zone with * Barry
                      wintertime. The changes             members. What you want to       this column, if you feel that it                                                                                          Sanders &
      love.”                                                                                                                 •    $25.00 for an individual on or before 5/8/09                                      Lomas Brown
                      were hard for them to               remember is that those          is of some help to you please
                      accept and adjust to.               members that participate in     let us know.           In the      •    $35.00 for an individual after 5/8/09
Conrad S. Valle Jr.                                       our meeting are experiencing    meantime, keep caring for
                      As caregivers all of our            some of the same type of        the ones we love,                  •    $55.00 for a group of four on or before 5/8/09                                    Massages
                      efforts go toward trying to         problems that we are
                      make life as simple as              experiencing and maybe, just                                       •    $65.00 for a group of four after 5/8/09                                           WYCD Young
                      possible for those we love.         maybe they can help make           Conrad S. Valle, Jr.                                                                                                   Country
                      Most of the time we take it         our lives less stressful.       Caregivers Support Leader          •    $15.00 per person for groups larger than 4 on or before 5/8/09
                      for granted because we love         Those discussions, in my
                                                                                                                             •    $25.00 per person for groups larger than four after 5/8/09                        50/50 Raffle
                                                                                                                             •    Fees include: participation in the walk, t-shirt, food and
                                                                                                                                                                                                                    Food
                                            VOLUNTEER OPPORTUNITIES                                                               complimentary all-day entrance to the Detroit Zoo
                                                                                                                                                                                                                    *Not confirmed
                      Volunteers        are   the         •   Newsletter Editor                auction (value of
                      foundation of all non-profits                                            $25.00 and up) May
                      and the Scleroderma                 •    Clean the office                1st deadline
                      Foun da tion      Mic higa n
                                                          •   Computer IT Support         •
                                                                                                                                   Register on-line today : www.firstgiving.com/30thwalk
                      Chapter       relies     on                                              Obtain       in-kind
                                                                                               donations for the
                      volunteers to assist them           •   Bookkeeping services
                      in several areas. Currently                                              Chapter of copy paper,
                      the Chapter is looking for          •   Run errands                      stamps, file folders,                                                                 Come See Mike Scott From WYCD LIVE
                      individuals who can assist                                               paper towels, trash
                                                          •   Obtain proclamations             bags, decaf. coffee,
                      them in the following
                                                              from cities                      tape, staples, paper                                      30301 Northwestern Highway
                      areas:
                                                          •   Obtain donations for
                                                                                               clips, packing tape,                                      Suite 300
                      •    30th Walk and Run                                                   rubber bands and post                                     Farmington Hills, MI 48334
                                                              the 30th Walk and
                                                              Run’s Silent and Live
                                                                                               its.                                                      (248) 865-7259 or (800) 716-6554
                                                                                                                                                         MIchapter@scleroderma.org
                                                                                                                                                         www.scleroderma.org/chapter/Michigan/2009.shtm.
   Page 8                                                                                            Scleroderma Source           SPRING 2009 ISSUE                                                                                                       Page 5

                                    30th ANNUAL WALK AND RUN
                                        SUNDAY, JUNE 7, 2009                                                                                          SUPPORT GROUP INFORMATION
                                    DETROIT ZOO, ROYAL OAK, MI
                                        REGISTRATION FORM                                                                          The         Scleroderma                     Health Center                           emotional well being.
                                                                                                                                   Foundation            Michigan
                                                                                                                                   Chapter offers support                •     Warren–11-1:00. 2nd                •    To share your strengths
PERSONAL INFORMATION                                                                                                               groups in six regions of our                Sat of the month -                      and frustrations in our
Name____________________________________________________________________________________________                                                                               except no summer                        caring group. What has
                                                                                                                                   state that offer people living                                                      worked for you might just
Address__________________________________________________________________________________________                                  with scleroderma a place to                 meetings St. John’s
                                                                                                                                                                                                                       be the thing that will help
City________________________________________ State_____________ Zip Code__________________________                                 share and help cope with                    Macomb Hospital                         another cope.
Phone:_________________________________ Email:_____________________________________________________                                others who understand what            The Michigan Chapter                                                             “We are always
I am: ___Male      ___Female Date of Birth: _____ (Note, if participating in run, please include date of birth)                    it is like to live with a chronic                                              •    To enjoy a confidential and
                                                                                                                                   illness.
                                                                                                                                                                         often hears that individuals                  safe place for open                  interested in
                                                                                                                                                                         are apprehensive about
TEAM INFORMATION                                                                                                                                                         attending a support group
                                                                                                                                                                                                                       communication exchange              expanding our
                                                                                                                                   Currently support groups are
Are you participating as a member of a team? _____Yes _____No                                                                      offered in these six regions          meeting but we are                       Each meeting is facilitated              support group
Team Name:_______________________________________________________________________________________                                  of our state:                         confident        that   your             by a support group leader                areas. If there
                                                                                                                                                                         participation in one of the              and meetings are free to all
Team Captain:_____________________________________________________________________________________
                                                                                                                                   •    Downriver-10-12 March            Chapter’s meetings will                  participants. For more                  is not a support
Team Captain Phone:_______________________________              _____Expected Number of Participants
Team Type: _____Corporation _____Family/Friends _____School _____Other__________________________                                        to Nov (dates varies)            enhance the quality of your              information and to reserve               group close to
                                                                                                                                        Our Lady of Angel’s              life. The top five reasons to            your space at an upcoming                  you and you
                                                                                                                                        Catholic Church                  join a support group                     meeting please contact the
REGISTRATION OPTIONS                                                                                                                                                     include:                                 office at (248) 865-7259.                 would like to
____Individual: $25        _____Group of 4: $55             _____Group Larger than 4 $15 per person                                •    Flint– 7 p.m. 4th                                                                                                   help establish
                                                                                                                                        Monday of every month            •     To discover that you are           We are always interested in
                                                                                                                                        McLaren Community                      not alone and that there           expanding our support                      one, please
____I am participating in the 5k Run.        ____I am participating in the 1-mile run for kids.
                                                                                                                                        Medical Center                         are       others who are           group areas. If there is not               contact the
                                                                                                                                                                               experiencing similar               a support group close to you
Each registration includes participation in the two-mile walk through the Zoo, walk t-shirt, door prize ticket,
                                                                                                                                   •    Lansing-6–7:30 monthly                 feelings.                          and you would like to help                   office.”
                    COMPLIMENTARY ALL-DAY ENTRANCE to the DETROIT ZOO!                                                                  ( day varies) MSU East                                                    establish one, please
Family Names (if applicable):                                                                                                           Fee Hall
                                                                                                                                                                         •     To learn coping strategies
                                                                                                                                                                                                                  contact the office and
Name:________________________________________________________Age:_____________ ___5k                              ___Kids Run                                                  that can be used day-to-
                                                                                                                                                                                                                  arrangements can be made
Name:________________________________________________________Age:_____________ ___5k                              ___Kids Run      •    Livonia- 2nd Thursday                  day to help individuals deal
                                                                                                                                                                                                                  to establish one. The
                                                                                                                                                                               with challenges they face
Name:________________________________________________________Age:_____________ ___5k                              ___Kids Run           of every month except                  and to learn more about            Michigan Chapter is also
Name:________________________________________________________Age:_____________ ___5k                              ___Kids Run           July and August. Meets                 the resources available in         looking to train new group
Name:________________________________________________________Age:_____________ ___5k                              ___Kids Run           at Livonia Dickenson                   the community.                     leaders.       If you are
                                                                                                                                        Center                                                                    interested in attending a
                                                                                                                                                                         •     To share your struggles            training session contact the
SELECT T-SHIRT SIZES:                                                                                                              •    Traverse City-1:30-4:30                and triumphs in a setting
Please select your size(s) below:                                                                                                                                                                                 office and leave your name
                                                                                                                                        April, May, Sept 23                    with those who walk in
                                                                                                                                                                                                                  and phone number.
Adult: ___S ___M ___L          ___XL ___XXL ___XXXL         Youth: ___S        ___M ___L                                                &      O c t      2 8 .                your footpath, which can
Toddler: ___2T        ___3T       ___4T Sizes not guaranteed to those registering after May 8, 2009.                                    Munson Community                       mean a great deal to your


 I WANT TO COLLECT PLEDGES!
 _____Yes! Send me a Pledge envelope so that I can help raise funds through collection of pledges. You can begin                       MANAGEMENT OF CUTANEOUS ULCERS IN SCLERODERMA
 collecting pledges now by creating your personal fundraising website ONLINE at www.firstgiving.com/30thwalk.
 PAYMENT INFORMATION                                                                                                            Cutaneous ulcers are common            configuration.          This             to trauma can be improved by         throughout a prolonged
 $_____is enclosed for the registration option(s) selected above.                                                               in patients with scleroderma           represents one of the minor              local skin care including topical    treatment period. Topically
 NOTE: If registering after May 8, 2009, please add $10 to each registration.                                                   and are both difficult and             criteria in the classification           antibiotics and protective           applied growth factors such as
                                                                                                                                challenging to treat. The ulcers       scheme of scleroderma by the             dressings. The Foot Smart            platelet derived growth factor
 $_____is enclosed for an additional unrestricted donation I would like to make to the Scleroderma Foundation.                  are usually due to a combination       American College of                      Company www.footsmart.com            (PDGF) have been tried in
  ______I am enclosing a check made payable to the Scleroderma Foundation for my grand total of $_________.                     of decreased blood flow                Rheumatology.                            phone      1-800-870-7149 is a       several patients. Skin grafting
                                                                                                                                secondary            to    the                                                  good source if various               sometimes can be used to
  ______I wish to charge my grand total to my: ___American Express         ___Visa ___MasterCard
                                                                                                                                sclerodermatous process in the         Ulcerations between finger               protective pads and cushioning       stimulate a damaged wound
                                                                                                                                skin and secondary trauma.             joints are more often                    rings for fingers and toes.          bed and decrease wound pain.
  Card Number___________________________________________________Expiration Date__________________
                                                                                                                                This is a major cause of               secondary to repeated trauma.            Infected wounds must be              Vasodilating oral medications
                                                                                                                                disability and morbidity in            Ulcerations are often painful            treated with moist dressings         may help in treatment and
  Name on Card________________________________________________________________________________                                  patients with systemic sclero-         and limit the use of fingers and         and appropriate topical and/         prevention of digital ulcers.
                                                                                                                                sis. Ulcerations on the tips of        hands.       Ulcers can lead to          or oral antibiotics. Chemical
                       Please mail this registration and your payment/donation to:                                              fingers are usually secondary to       o s t e o m ye l i t i s a n d e v e n   enzymatic debridement agents
                               Scleroderma Foundation Michigan Chapter;                                                         vascular occlusion and often are       amputation. Ulcerations over             may sometimes be helpful
                   30301 Northwestern Highway; Suite 300; Farmington Hills, MI 48334.                                           pitted in a star like                  boney prominences secondary
                       Fax registration to 248.865.7523 if paying with a credit card.
Page 6                                                                                   Scleroderma Source         SPRING 2009 ISSUE                                                             Page 7


                                             Q AND A WITH CAROL                                                                     2009 Hope, Health and Healing Conference
                    I have lost the padding on     to provide proper gait and      shoe called the Z-Coil,                                  Sunday, October 11, 2009
                    the bottom of my feet. How     balance. They also lack         which has a large spring at
                    can I minimize the pain        seams which can tend to rub     the heel to provide
                    associated with this?          toes and cause blisters. This   cushioning, and built-in              Held at the Park Place - 23400 Park St. Dearborn, MI 48128
                                                   is not only a concern for       orthotics. You can visit them
                    Answer: A visit to a           those that are diabetic, but    online at www.zcoil.com to
                    podiatrist may prove to be     also for those that have        find a store near you.             8:00    Registration and Breakfast
                    helpful. A podiatrist can      Raynaud’s that affects their
                    make molds of your feet and    feet. This type of shoe can
                                                                                   A consultation with a              8:30    Welcome Remarks - President Ilene Ringle
                    provide orthotics that slip
                    into your shoes to provide
                                                   be found on line at
                                                   www.heliohealth.com,
                                                                                   podiatrist can help to                                                                                  $30.00
                                                                                                                                                                                         PER PERSON
                    support and cushioning.                                        determine whether you
                                                   www.healthyfeetstore.com.
                    Some people may benefit        You may also want to visit
                                                                                   could benefit from a               8:45    Inspirational Speaker - Lou Shawbitz
                    from diabetic shoes, which                                     specialty shoe and if so,
                                                   your local medical supply
                    have a wider toebox and                                        help to identify the best type
                                                   store as they will be able to
                    additional cushioning. These   assist you with correct
                                                                                   for your needs.                    9:30    James Seibold MD,
                    shoes allow for orthotic       sizing. Several people have                                                 Lessons from the Bedside: New Research in Scleroderma
                    insertion and are designed     recommended a specialty                                                    Question and Answer Session

                    CHANGES TO MICHIGAN CHAPTER MEMBERSHIPS                                                           10:30 First Break
  “Starting in      The      Scleroderma               outstanding          and    memberships will be due            10:40 Kevin Chan MD
                    Foundation        Michigan         informative publication     by June 1st and will be
    2009 all        Chapter is pleased to              on scleroderma-related      effective for one year.                  Pulmonary Hypertension Evaluation and Treatment of Secondary Causes
                    announce that they have            topics; value of $25        Renewals can be completed                Question and Answer Session
 memberships        changed their membership                                       via mail or by contacting the
                    benefits and changes for       •   Complimentary               office and using your credit
 will be due by     2009. T he cost for                entrance to our Patient     card. The Michigan Chapter         11:40 Peggy B. Graham
                    membership is now $ 25.00          Education Days in           is making these changes to               Musical Reflections
 June 1st and       and the benefits include:          2009; value of $30          reduce the cost of mailings
                                                                                   and postage and hopes all
will be effective   •   Complimentary annual       •   Chapter newsletter                                             12:00 Lunch and Vendor Time
                                                                                   members will understand.
                        subscription to our
                                                   •   All mailings throughout     In the event you are unable
 for one year.”         national    quarterly
                                                       2009                        to meet this deadline please
                        newsletter,      the                                       contact Janus to discuss            2:50   Gary Bimberg, Esq
                        Scleroderma Voice, an      Starting    in   2009     all   your situation.                            Disability, Knowing Your Rights and Maneuvering the Application Process
                                                                                                                              Question and Answer Session

                             IRA CHARITABLE ROLLOVER RESTORED                                                          1:30   Break
                    In October of 2008 the         This news is something the      extra incentive the Federal
                    Federal      Government        Scleroderma Foundation          Government has provided            1:45    Kathy Neuman, MSN, RN, HSMI
                    restored       the     IRA     Michigan Chapter hopes          seniors       with    your
                    Charitable Rollover. The       will   motivate donors to       dedication for the mission
                                                                                                                              Laughter: Just What the Doctor Ordered
                    legislation allows those       consider       making     a     of the Michigan Chapter                    “Techniques In Managing Stress Including the Latest in Laughter Therapy”
                    age 70.5 and older to          financial contribution in       can be established with                     Question and Answer Session
                    donate up to $ 100,000         memory of a loved one, in       ease.
                    from their individual          replace of a birthday gift,
                                                                                                                       2:45   Raffle
                    retirement accounts to
                    charities without having to
                                                   holiday gift or simply as a
                                                   straight donation.              Won’t you take the time                                                                       Don’t Wait To
                    count those distributions
                    as taxable income, for
                                                                                   today to sit down and write
                                                                                   a check that will touch the
                                                                                                                       2:50   Doris Soliz-Hill                                  Register Call:
                                                                                                                              Building Your Own Bridges
                    contributions made in 2008
                    and calendar 2009.
                                                   Even in these economical
                                                   challenging times with this
                                                                                   lives of those afflicted with
                                                                                   scleroderma?                                                                                (248) 865-7259
                                                                                                                       3:00   Day Ends