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Hopes Dreams


									Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                       FALL 2011

                                  Hopes & Dreams
                                  Huntington’s Disease Society of America - Illinois Chapter Quarterly Newsletter
                                  HDSA/Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008 ~

President’s Message
Dear friends,

I love the Autumn Season! It’s not the end of summer; it’s the beginning of fall! I see it as an
opportunity for change! I am re-energized to get more done and head happily into the
upcoming Holiday Season. It is this positive attitude that I want to share with you as the new
President of the HDSA Illinois Chapter.

Like so many of you, I have experienced the grief and loss of being part of an HD family.
Huntington’s disease was introduced to my family when I was in grade school and an Aunt was diagnosed. This made us
aware that my grandfather, who had been institutionalized years earlier, also had the disease. He had 11 children,
including my mother, all of whom were now at risk. A few more years went by and a few more aunts and an uncle were
diagnosed. When I was in High School my mother was diagnosed. This was especially difficult because not only did we
know her fate but my sister and I now had “at risk” status as well. The prevalence of suicide in my family was high. Only a
few passed away from physical complications of Huntington’s disease. By the time I was twenty-two I had lost my
grandfather, my mother, and five aunts and uncles to this devastating disease. Unfortunately, the worst was yet to come.
At the age of 30 my sister Pam, my best friend, was diagnosed. She and I had always been close and did everything
together. She was divorced and had two small children. She worked a full-time job and I helped take care of her boys.
We lived within a mile of one another. Over the past 15 years I have watched her slowly lose each of her abilities. In June
she lost her battle with HD. My nephews are now “at risk.”

But, like I said earlier, I choose to have a positive attitude. I am the person I am today because of my situation. Dealing
with Huntington’s disease has given me a strength that others envy. Even though my sister lost her battle, I will not give
up the fight! There are so many others, maybe in your family, who we still need to care for. And a treatment or cure is out
there, somewhere, and the dedicated doctors and researchers are doing their best to find it. We can all help by working
as a team. I invite you to join the HDSA family in whatever small way you are able. Make a donation, attend a fundraiser,
be a volunteer or join the Board. There are so many ways in which you can help. All of my contact information is within
this newsletter. I look forward to getting to know more of you during my term. I truly appreciate the opportunity to serve
you as President of the HDSA-IL Chapter Board.

Charlotte Rybarczyk
President, HDSA Illinois Chapter

          I want to help make this the last generation with HD. Enclosed is my tax-deductible gift of:

              $25           $50           $100           $250            $500     $1,000   Other _____________

          Address________________________________________City___________________ State________ Zip________

          Please make checks payable to HDSA Illinois Chapter.
          Mail to: HDSA/Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                      1
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                          FALL 2011

Annual Celebration of Hope Dinner
Was a Huge Success!
By Deborah Boyd - HDSA, Great Lakes Regional Development                          Center, directed by Dr. Kathleen Shannon who spoke at
                                                                                  the Gala.

HDSA-Great Lakes Region in conjunction with the Illinois                          After silent and live auctions and dinner, the audience
Chapter raised more than $50,000 for patient care and                             enjoyed entertainment by vocalist Joan Hammel (who
research towards treatments and a cure at its annual                              also served as the evening’s Mistress of Ceremonies),
Celebration of Hope Gala on August 26, 2011, held at                              and Mr. Danny Wright, a Las Vegas headliner and world
the Renaissance Chicago Hotel. Thanks to the support                                                          class pianist. The floral
of our Gold sponsor, Lundbeck,                                                                                arrangements were donated
Silver sponsor, the Ross Family, The Cuccinotto                                                               by Elaine Jacobson and set
and scores of other caring                                                                                    the tone for a beautiful
supporters.                                                                                                   evening.

The Gala attracted 180 guests and                                                                          Thanks       to    committee
featured a beautiful three-course                                                                          members; Dan Born, Liz
dinner paired with wine.                                                                                   Born, Michael Brundage,
                                                                                                           Pete Douville, Denice Korcal,
The Gala honored Ms. Judy                                                                                  Tami      Friedman,    Dave
DeAngelo with the Corporate                                                                                Hodgson, Martin & Elaine
Leadership Award and the entire                                                                            Jacobson, Jean Jaglin, Barry
Cuccinotto Clan as our HD Family                                                                           &     Marilyn   Kahn,    and
of the Year. The Cuccinotto family                                                                         Kathleen Shannon for helping
has touched the lives of countless                                                                         to plan a wonderful event.
members of the HD community through their dedication                              Special thanks to Abbe Bauer, Sethness Greenleaf, Bob
and active participation to the Illinois Chapter; where                           & Christine Williams, Films for Good, Jean Marie
John Cuccinotto serves as Vice President of the chapter                           Gruhlke, CNA Foundation, The Srajer Family and
board. Ms. DeAngelo is the President of Jade Carpentry                            Weisman & Associates for their special talents and
Contractors and is a fervent supporter of HDSA.                                   donations.

Proceeds     from the event go to support HDSA’s twenty-                          If you would like to volunteer for Celebration of Hope
one (21)      Centers of Excellence around the country,                           2012, please contact Deborah Boyd, Great Lakes
including    the HDSA Center of Excellence for Family                             Region Development Director at
Services     and Research at Rush University Medical

   HDSA Center of Excellence                                                         FUNDRAISING
   at Rush University Medical                                            IT’S TRUE…FUNDRAISING IS NOT ALWAYS EASY!

   1725 West Harrison Street,                           We’re all busy, time is hard to find, money is tight, you don’t like talking to
   Suite 755                                            strangers, your family and friends get tired of you asking for their help. These
   Chicago , IL 60612                                   are all things we think when we hear the word fundraising. Here are some
   Director:                                            easy ways to help raise the funds that so dearly help HD families, research
   Kathleen M. Shannon, M.D.                            and education!
                                                                 Donate a portion of your profits from your small business
   Nurse Contact:                                                Donate money from a garage sale, bake sale, etc.
   Jeana Jaglin, RN, CRC                                         Have a car wash or a dog wash…just need a hose, some soap and a
   Tel: 312-563-2900
   Fax: 312-563-2684
                                                                  sign! (and kids can help too!)
   Email:                        Remember, you don’t always have to think BIG! Every little bit counts.
                                                        Donations can be sent directly to the Chapter P.O. Box in Rolling Meadows,

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                          2
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                                   FALL 2011

The 26th Annual National                                                          Ask the Experts: I am
Convention Recap By Thomas Barr                                                   struggling at work, but I’m not
                                                                                  sure I’m ready for Disability. Is
The Annual HDSA Convention took place this year in
Bloomington, Minnesota, just outside Minneapolis, from
          th       th
                                                                                  there another option?
June 24 to 26 . The event was well attended. The                                  By Stacy Barton, MSW, LCSW, Clinical Social Worker, HDSA Center
                                                                                  of Excellence, Washington Univ. School of Medicine, St. Louis, MO
convention serves a number of functions, but for me the
most anticipated part is the Research Forum that is held                                    For most people, continuing to work is important
Saturday morning. Because many of the people who                                  financially, socially, and emotionally. However, some
attend the convention have not done so before, part of                            individuals with HD may be at risk of job loss because of
the Research Forum provides background information                                their challenges at work. Additionally, many people with
on HD to give more meaning to the actual cutting edge                             HD fear disclosing their diagnosis at work. This lack of
research being done. The Moderator of the forum was                               disclosure, however, may preclude protection under the
Dr. Marcy MacDonald who is the Chair of the HDSA                                  Americans with Disabilities Act (ADA).
Medical/Scientific Advisory Committee. For me the most                                      One often effective approach is to request job
exciting presentation was by Dr. Neil Aronin of the                               accommodations. Appropriate accommodations can
University of Massachusetts Medical School, who spoke                             allow a person to continue to work for many months or
on “HD Therapeutics by Silencing the Mutant Huntington                            years. A key provision in the ADA law is that employers
Gene”. This is the first time I have heard of an approach                         must allow “reasonable” accommodations to employees
to combat HD that provides the promise to prevent                                 with disabilities. Defining what is reasonable is quite
someone who is gene positive from coming down with                                subjective however, so it is ideal if you can approach
the symptoms we know as HD or keep someone from                                   your employer with specific requests.
getting worse. He also spoke at the “Potential New                                          Before you talk to your supervisor at work, sit
Therapies” session later that day. There were two ways                            down with trusted family members, friends or even
presented as to how this approach to combating HD                                 coworker to have an honest discussion of your
might be administered and there are many tests and                                challenges at work. It is important to get the feedback of
trials which will need to be done before we can use this                          others, as you may not perceive all of your challenges.
as a therapy for HD, but this is a breakthrough as                                Here are some examples of accommodations you could
significant as vaccines were for combating other                                  request:
diseases and will have applications far beyond HD. Dr.                                You are no longer driving and rely on others or
Aronin has agreed to be our keynote speaker at our                                     public transportation to get you to work. Since this
Illinois Convention that will be held 03/10/12. He has                                 might make it difficult to arrive punctually for work,
agreed and will be our keynote speaker. The title of his                               request a flexible start time.
presentation will be “The Promise of Gene Silencing in                                If you have difficulty prioritizing work tasks, ask that
HD Therapeutics”.                                                                      these be itemized for you, preferably in writing.
                                                                                      If you have problems with mood, ask to be allowed
For the search for HD therapies to be successful we                                    to make phone calls at work to therapists, doctors, or
need to have a pool of people who are willing to be                                    friends for support.
members of study groups and to participate in clinical                                If you have chorea or other movement problems,
trials. These people provide an incentive and face to                                  ask that your workstation be located near necessary
researchers that makes them want to find a cure and                                    office equipment, bathrooms, or the front door.
provides them with a path to test if a therapy works and                                    If these accommodations are not successful, ask
allows them to get the necessary approvals to bring                                if you can be reassigned to a less stressful job within
drugs out to combat HD. Many of the existing study                                 your company. You can also look at other available job
groups are currently being realigned and the tests are                             roles outside of your organization. If you still find you
being reviewed to come up with worldwide standards                                 are not able to work, then you can consider applying for
that will better coordinate the previous groups and bring                          disability.
them under a single worldwide organization.                                                 It may be difficult or even embarrassing to start
                                                                                   the conversation at work, but it is your right under the
At the awards dinner Saturday night the IL Chapter                                 ADA to ask for reasonable accommodations and
received 2 awards. The Walk for the Cure, received the                             considering the benefits of remaining employed, it
“Best Outstanding Fundraising Event” award. When it                                would be unfortunate to lose your job when
was presented it was announced as the best sustaining                              accommodations could allow you to keep working.
fundraising event. Next years walk will be held Sunday                                      Staying employed lets you access short term
May 20 . We also received the “Best Educational Event”                             and long term disability and medical insurance benefits
award for the Illinois State Convention.                                           and will likely give you greater income than you would
                                                                                   receive under disability programs.
Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                                   3
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                                              FALL 2011

                                                                                                                    Hopes & Dreams
    Kids and Teens that Help a Parent with HD                                                               is the official publication of the
                                                                                         Illinois Chapter of Huntington’s Disease Society of America, Inc.,
                                                                                                     P.O. Box 8383, Rolling Meadows, IL 60008
                                                                                                                    (630) 443-9876
                                                                                   This newsletter attempts to report items of interest relating to the individuals
                                                Who can be in                         with Huntington’s Disease, their families, healthcare professionals, and
                                                                                     interested friends and supporters. HDSA and the Illinois Chapter do not
                                                the study?                          provide medical advice, nor do they promote, endorse or recommend any
                                                                                   product, therapy or institution. Please check all drugs, treatments, therapies
                                                Any child aged                      and products with your physician. Statements and opinions expressed in
                                                10-20 who does                       articles are not necessarily those of HDSA, Inc. and the Illinois Chapter.

                                                something to help                 CHAPTER BOARD OF DIRECTORS FOR 2011-2012
                                                or care for a
                                                parent with HD.                   CHAPTER OFFICERS
                                                                                  PRESIDENT – Charlotte Rybarczyk
                                                                                     (H) 847-259-3593 (C) 847-528-7358
What is involved?                                                                 VICE PRESIDENT – John Cuccinotto
A one-time only, confidential 45-60 minute interview                                 (H) 630-873-0052 (C) 630-873-0052
with the child about their helping/ caregiving                            
experiences and what support they have in helping                                 TREASURER – Mary Bos
to care for their parent.                                                            (H) 630-830-5329 (C) 630-781-5329
                                                                                  ASST. TREASURER – Peggy Monson
Where will the interview take place?                                                 (H) 847-392-3450
Any place that is most comfortable for the child.                          
This can be either in person, or over the phone.
                                                                                  BOARD MEMBERS
Why is this study being done?                                                     Thomas Barr -
As a social worker with families coping with HD for                                 (H) 708-447-2597 (C) 847-602-8622
many years, I often saw kids helping their parents,                               Daniel Born, Ph.D. -
but knew of no services specifically designed to                                    (H) 773-275-5827 (C) 773-896-4327
support them. In order to develop services to
                                                                                  Dave Hodgson -
support young carers, we need to better                                             (H) 815-498-6092 (C) 630-386-3928
understand what they experience and what they
                                                                                  Susan Hodgson -
might find helpful. Your involvement will help to                                    (H) 815-498-6092 (C) 815-508-5184
design, and inform programs and services for kids
who help their parents.                                                           Barry Kahn –
                                                                                     (H) 224-433-6319 (C) 847-975-2403

Are their any benefits?                                                           Marilyn Kahn –
                                                                                    (H) 224-433-6319 (C) 847-204-2403)
Teens who participate will receive a $10.00 gift
card as a ‘thank you’ for taking the time to be a part                            Bob Leck –
of the study.                                                                       (H) 815-498-6092 (C) 815-508-5184
                                                                                  Augustine “Gus” Marchetti
                                                                                    (H) 847-356-2880 (C) 847-602-8622
 If you would like to participate or receive more                                 George Stecyk –
          information about this study,                                             (H) 630-961-9080 (C) 630-561-7198
                                                                                  Joe Wiedemann
                    Call or e-mail                                                  (H) 847-742-6038 (C) 847-505-3933
           Melinda Kavanaugh, MSW, LCSW
                    608-370-4208                                                  COMMITTEE MEMBER
                                                     Maryann Moynihan – Newsletter
                                                                                  (H) 708-862-1364 (C) 708-955-3080

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                                                   4
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                                   FALL 2011

Progression of                                                                    Milestones in
Huntington’s Disease                                                              Huntington's Disease
Copied from HDSA Website: Marsha L. Miller, Ph.D., June 15, 2011
D Mice
Rates of progression vary among individuals with Huntington’s                     1872: In a case study of Long Island families with a movement
disease. Dr. Diana Rosas and colleagues studied disease                           disorder, George Huntington described the clinical features of
progression as measured by magnetic resonance imaging.                            the disease that now bears his name and identified it as a
They found that age of onset, as defined clinically, is a better                  genetic disorder.
predictor of the rate of progression than CAG counts.
                                                                                  1911: Alois Alzheimer described the pathological changes that
Twenty-two subjects in early stage HD with CAG counts                             occur in the striatum and cortex of Huntington's patients.
ranging between 40 and 55 were followed for approximately a
year. Those with higher CAG counts associated with juvenile                       1983: Marcy MacDonald, James Gusella, and colleagues map
HD were not included. Whole brain volumes, gray and white                         the HD gene to chromosome 4.
matter volumes, cortical thinning, and the volumes of various
subcortical structures were all examined.                                         1986: Joseph Martin, Susan Folstein, and Jason Brandt
                                                                                  develop a linkage test for HD gene carriers (the old 'marker'
Over the year, whole brain volumes declined 3.6% per year in                      test).
the young onset group compared with 1.55% in the midlife
onset group and 1.77% in the older onset group. For white                         1993: The Huntington's Disease gene was discovered by the
matter, the rate of loss was 4.6% per year for the young onset                    HD Collaborative research group. Individuals at risk for the
group, 1.8% for the midlife onset group as well as the older                      disease could now seek predictive testing and clinical
onset group. Gray matter was loss at a rate of 5% for young                       diagnoses could be confirmed. The isolation of the gene
onset group, 2.1% for the midlife onset group, and 1.7% for the                   prompts a dramatic increase in HD research.
older onset group. There were five areas of the cortex where
thinning was significantly faster in the young onset group. The                   1993: The Huntington Study Group is founded.
thinning of the corpus callosum occurred at a higher rate than
the other two groups in every part except the midportion.
Volume reduction of the basal ganglia had slowed for the
young onset group whose volumes were already much smaller
than for the other groups. Caudates were 40% smaller,
putamen volumes 25% smaller, and pallidum volumes 20%.

We know that CAG counts are correlated with age of onset; on
average, the higher the CAG count, the earlier the onset. This
study found that age of onset was a better predictor of
progression with people with young ages of onset experiencing                     1996: Gillian Bates develops the first transgenic Huntington's
faster atrophy of various regions of the brain than those with                    Disease mouse model of the disease. This lead to insights into
midlife or later in life onset. That tells us that other factors are              the disease that were confirmed in HD patients and allowed
involved in the rate of progression than CAG counts -- genetic,                   preclinical testing of potential treatments.
epigenetic, and environmental. Other researchers are
attempting to discover these factors.                                             1997: The HDSA inaugurates its Coalition for the Cure.

Another important contribution of this study is to show the                       1999: The first therapeutic intervention in a transgenic HD
potential importance of MRI to the conducting of clinical trials.                 mouse, minocycline, slows progression and prolongs life.
Currently, neuroprotective trials require hundreds of
participants because of individual variation in progression and                   2001: The results of the first Phase III clinical trial, CARE-HD,
long periods of time because the clinical measurement of total                    are announced. Although the trial did not result in the approval
functional capacity changes slowly. MRI is a more sensitive                       of a treatment, there was a trend towards a slowing of
measure of progression that can help to compensate for                            progression in the patient group that received CoQ10. A new
variability, thereby shortening the time and number of                            Phase III trial of higher dose CoQ10 is now recruiting.
participants required for a Phase III trial. In addition, MRI
results can provide some preliminary measures that could help                     2005: CHDI is founded as a virtual translational research
prioritize which potential treatments should move into Phase III                  organization. Dr. Robert Pacifici is hired as its Chief Scientific
trials.                                                                           Officer; he presents a strategic plan for the development of
                                                                                  treatments to the HD community at the HDSA convention.
The next step is to replicate this study with a larger group of
participants. The FDA has not yet accepted magnetic                               2007: The FDA approves tetrabenazine for the treatment of
resonance imaging results as a biomarker for progression in                       chorea in Huntington's Disease. This is the first medication
Huntington’s disease but multiple studies such as this one may                    specifically approved for HD.
change that decision.

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                                   5
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                        FALL 2011

Advocacy Corner:
3 Ways to Take Action Right Now!
By Jane Kogan, MSW, Manager, HDSA Advocacy & Program Services
                                                                                            nd                    rd
We are up to 100 cosponsors of H.R. 718 in the House, including Jesse Jackson (2 ), David Lipinski (3 ), and Adam
Kinzinger (11 ) and 7 cosponsors of S. 648 in the Senate! We need your help to secure additional cosponsors!

Here are three things YOU can do right now to generate support for the Huntington’s Disease Parity Act:

     1. Use the HDSA E- Advocacy Center, to contact your Rep and Senators about
        cosponsoring the HD Parity Act (S. 648/H.R. 718) with just a few mouse-clicks!

     2. Contact Senator Mark Kirk about S. 648! Senator Kirk cosponsored the Huntington’s Disease Parity Act as a
        Representative last year, and now we need his support in the Senate! You can call Senator Kirk’s office in
        Washington, DC at 202-224-2854, and speak to Shauna McCarthy, or email Shauna at

     3. Educate the Media! Use the HDSA E-Advocacy Center, to send a letter to the editor of
        your local newspaper to educate the media, your community, and Congress about HD. You can also contact Jane
        Kogan at for a printed letter you can adapt, and local newspaper information.

Care Coordination Portal
HDSA is pleased to offer the HDSA Care Coordination Portal, powered by Lotsa Helping Hands. The HDSA Care
Coordination Portal is a free, private, web-based tool that caregivers can use to manage the care and administrative
needs of their loved ones as well as the outpouring of support from their network of family and friends. Create your
caregiver community today at

Ask the Social Worker
In October’s Ask the Social Worker, Anne Leserman, social worker at the HDSA Center of Excellence at the University of
Iowa, discusses Unawareness. To read this month’s and previous month’s Ask the Social Worker, visit If you have any comments on Ask the Social Worker or would like to ask a question, send an e-mail
to Seth J. Meyer at with the subject “Ask the Social Worker.” We look forward to your questions.
Juvenile Huntington's Disease
Copied from HDSA Website

Fewer than 10% of individuals with HD develop symptoms before age 20. Because it is uncommon and differs from typical adult-onset
HD, in both the neurological symptoms and the ways that it changes the lives of the individuals and families that it affects, juvenile
onset HD presents unique challenges to affected individuals, their caregivers, and the various professionals who are called upon to
assist them. Typical initial symptoms of juvenile HD:

        •       Positive family history of HD, usually in the father              •    Seizures
        •       Stiffness of the legs                                             •    Changes in oral motor function
        •       Clumsiness of arms and legs                                       •    Chorea in an adolescent
        •       Decline in cognitive function                                     •    Behavioral disturbances
        •       Changes in behavior

It is suggested that you contact your closest HDSA Center of Excellence if you have reason to suspect a case of juvenile onset
Huntington's Disease.

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                         6
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                                FALL 2011

 MEMORIALS AND TRIBUTES                                                           In Memory of Bruno Mezyk from Denice Wolf
                                                                                  Markham, Amy Michals, The Staff of Life Span,
In Memory of Michael J. Gilbert from Donald & Judith                              Magdalena Pogorzelski, Piotr Fraczek
Moore, John Holmes, Lois Stenstrom, Lifestyle Options                             In Honor of Camp Earth from Paul Hruska
Inc, Adrienne & Dave Berton, Barbara Sexton & Family,
Vincent & Sandra Clarke, Thomas Gilbert, Gwen & Larry                             In Honor of Scott Knudsvig from Belinda Knudsvig
Breen, Mary Ellen & Mike Deir, Peter & Mary Lind, The                             In Honor of Sharon & Clarence Weise from Bill Cook
Nolan Family, Lyric Opera of Chicago
                                                                                  In Honor of Tom Barr on his 60 Birthday from Barry
In Memory of Pamela J. Tricou from Mary Ann Pauley,                               & Marilyn Kahn
Michael & Ann McLaughlin, Betty Johnson, Holly & Ed
Murawski, Mike & Jennifer Demski, Christy & Dennis
Reimer, Dave & Sue Hoffman, John & Peggy Monson,
Miriam & Paul Manno, Jenni & Linc Berns, Rob & LuAnn
Gersch, Harry & Kathy Dublinski, Tony & Josie D’Ulisse,
Gloria Kruczek, Patsy & Gina Marchetti, Tom
Sweetwood & Dee Dee Palmer, Rosemary Marchetti,
Dave & Dolly Owens, Angelo & Gert Sciarroni, Michael
Marchetti, Helen & Philip Anderson, Margaret Balmes,
Ken & Tricia Barnett, Bill & Karen Lattierre Jr., Beverly
Turzy, Doug & Melissa Kanwischer, Jan Hollatz,
Christine Offutt, Mary Bos, Brian & Kathy Sauerland,                                     Memorial and Tribute Donations
John & Candy Matheson, James Conley Sr., Don & Lois
Kanwischer, David & Paula Meltz, Sharon & Clarence                                 Complete the form below and send along with your
                                                                                   contribution to:
Wiese, State Bank of The Lakes, Jim & Beth Onderisin,
                                                                                             HDSA – Illinois Chapter
Debbie & Jim Froman, Barry & Marilyn Kahn, Carolyn                                           “Memorial/Tribute”
Mascitti, Pat & Patty LoMascolo, Ted Ross & Kathie                                           P.O. Box 8383, Rolling Meadows, IL 60008
                                                                                   I would like to make a contribution in memory of:
In Memory of Kristen L. Carli from Matthew Edelstein,
Debbie, Lori, Jan, Stacie, Dawn, Cindy, Marcia, Tina,                              ______________________________________________
Juanita, Kevin, Elaine & Ken Gallenbeck, Longfellow
Elementary PTO, Roberta Kohler, Co-Workers at                                      My Name______________________________________
Triumph Gear Systems, The Grumet Family, WLG USA,
Cliff & Ellen Jackson                                                              Address_______________________________________

In Memory of Chuck Anderson from Citizens Bank of                                  City, State, Zip__________________________________
Edina, Town & Country Bank Midwest, Kent & Ann
Anderson & Family, Bill & Mary Lou Anderson, Nancy                                 Amount of Contribution: $___________
Nieders, Town & Country Bank, Nancy & Bill Klues, Mike
Melton, JR Butterfielde, Lisa Guyer                                                +=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+=+

In Memory of Raymond, Alice & Karen Carter from                                    I would like to make a special events contribution
Catherine Carter                                                                   (birthday, new home, anniversary, graduation, etc.) in
                                                                                   honor of:
In Memory of Ralph Short from Lois Short
In Memory of Glen Howard from Carole Coleman                                       ______________________________________________

In Memory of Virginia Thanasouras from Gerry &                                     My Name______________________________________
George Nicholaou
In Memory of Frances Kavanaugh from Tom & Lynn
Grant                                                                              City, State, Zip__________________________________
In Memory of James Hilgenbrinck from Sharon &
                                                                                   Amount of Contribution: $___________
Clarence Wiese, Dora Jansen & Debra Gardner,
Blessing Hospital

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                                7
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                            FALL 2011

Quinazoline Derivative may treat Huntington's disease
Copied from HDSA Website: Marsha L. Miller, Ph.D., July 21, 2011

Researchers have discovered a drug that inhibits a                                Working with striatal cells from the YAC128 HD mice
signaling pathway implicated in Huntington's disease                              and with human neuroblastoma cells transfected with
and delays motor symptoms in a drosophila (fruitfly)                              138 CAG repeats, the researchers found that the SOC
model of the disease.                                                             pathway is heightened in the HD cells as compared to
                                                                                  normal cells. EVP4593 inhibited SOC entry.
According to a review on the online Alzheimer’s Forum,
the research has its roots in a screen done at EnVivo                             More work needs to be done to isolate which molecular
Pharmaceuticals by Hsin-Pei Shih, one of the authors of                           component or components of the SOC entry pathway
the current study. Dr. Shih and colleagues discovered                             are the precise therapeutic targets, but the researchers
that a drosophila model of HD performed better in                                 provide some evidence that one of the transient receptor
climbing when treated with the quinazoline derivative                             potential (TRP) family of ion channels located on the
EVP4593. Typically screens are done against already                               plasma membrane is involved, specifically TRPC1.
validated targets in cells but these screens were done in
the drosophila to see which types of drugs delayed the                            Why is the SOC pathway overactive in HD? In another
onset of motor impairment.                                                        article, Dr. Bezprozvanny found that mutant huntingtin
                                                                                  specifically binds to and activates the C-terminal region
The search for the mechanism by which this drug might                             of the type 1 inositol 1,4,5-trisphosphate receptor
work first turned to nuclear factor κ-light-chain-enhancer                        (IP(3)R1), an intracellular Ca(2+) release channel. This
of activated B cells (NF-κB) because EVP4593 is known                             could cause calcium to be released from the ER which
to inhibit it. NF-κB is a protein complex found in almost                         would then activate the SOC pathway to replace it. Over
all types of animal cells. It controls the transcription of                       time, calcium would build up in the cell and cause
DNA and plays a critical role in regulating the immune                            stress. Dr. Bezprozvanny had previously shown that
response to infection. However, other known inhibitors                            inhibiting IP(3)R1 is neuroprotective in the YAC128
of NF-κB did not produce the same results so that was                             mouse so this is another possible therapeutic target
not the mechanism.                                                                related to calcium signaling.

Dr. Bezprozvanny was asked to collaborate with Dr. Shih                           "Our studies have uncovered a new therapeutic target
and other colleagues to discover the actual mechanism.                            for Huntington's disease treatment and possibly for other
They hypothesized that the drug might act by inhibiting                           neurodegenerative       diseases,"    said    Dr.     Ilya
the store-operated calcium (SOC) pathway since it is a                            Bezprozvanny, professor of physiology and senior
known precursor of NF-κB activation and since EVP4593                             author of the current study, published in today's issue of
had been shown previously to inhibit the SOC entry                                Chemistry and Biology. "In addition, we now have this
pathway in a certain type of cell. As calcium in the                              new series of compounds that gives us a tool to study
endoplasmic reticulum of the cell becomes depleted, it is                         the pathogenesis of Huntington's disease."
restored by an influx of calcium through the plasma
membrane that separates the cell from the outside                                 “If this holds, this compound can be considered to have
environment. This is called the store operated calcium                            potential therapeutic application for Huntington’s,” he
pathway.                                                                          said. “As we ultimately seek a cure, we are encouraged
                                                                                  to have found something that may slow the progress or
                                                                                  delay the onset of the disease.”


  Melinda Kavanaugh, the former HD social worker for the St. Louis area, will be speaking at the Geneva HD
  Support group meeting on Sunday, November 20th at 2:00pm at Delnor-Community Hospital. Melinda is
  currently getting her PhD in social work at the University of Wisconsin in Madison. Her dissertation research
  is on children who help care for a parent with HD. Melinda will be at the meeting to discuss her study. All
  interested parties are invited to attend."

  QUESTIONS, CALL ANN LISKA AT (630) 761-8596.

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                           8
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                             FALL 2011

                                                                                  In human clinical trials of Alzheimer's patients, the
  PBT2 Huntington's Disease                                                       experimental drug improved the cognition of patients
   Trial Presented at World                                                       which is the most important aspect of behavior to be
                                                                                  affected by Huntington's. Scientists believe the drug
  Congress on Huntington's                                                        affects the distribution of naturally occurring, biological
                                                                                  metals in the brain which appear to play a role in protein
    Disease in Melbourne                                                          aggregation. This protein aggregation is believed to be
                                                                                  the cause of cell death in neurodegenerative diseases.
MELBOURNE,         AUSTRALIA,       Sep       12,       2011                      This research on biological metals is led by Australian
(MARKETWIRE via COMTEX) -- Prana Biotechnology                                    scientists but has generated international attention and
Limited (asx:PBT) announced today that researchers                                is strongly featured at the World Congress on
are planning recruitment for a phase II clinical trial of the                     Huntington's Disease being held currently in Melbourne.
experimental drug PBT2 in Huntington's patients. There
are currently no treatments for the genetic,                                      Professor of Neurology Rudolph E. Tanzi from Harvard
neurodegenerative disease; Australia is increasingly                              Medical School, who worked on the team that
seen as a leader in the development of therapies for                              discovered the Huntington's Disease gene and is a
neurologic disorders. Huntington's often affects young                            frequent advisor to the US Congress on neurological
adults and progressively impacts the body, mind and                               disease, research and treatment, says, "I believe PBT2
emotions. The disease causes incapacitation and death                             has a very high chance among all current candidate
about 15-25 years after onset.                                                    therapies to be the first effective disease-modifying
                                                                                  treatment for Alzheimer's Disease and we are very
"Compared to other diseases, there are relatively few                             hopeful we will see similar results with Huntington's
researchers working on treatments for Huntington's, so                            Disease, a terribly devastating disease in dire need of a
we are very pleased to be conducting this trial," said                            cure."
Mental Health Research Institute Associate Professor
Robert Cherny, who is also Prana's Head of Research.                              Researchers conducting the trial will need to recruit
"PBT2 initially showed great results in patients with                             approximately 100 people with early stages of the
Alzheimer's, which attracted the attention of many                                disease across Australia and the United States, at 14-16
leading scientists working in the Huntington's field                              sites. Patients will be followed over 6 months.
around the world because the two diseases have quite a                            Researchers will assess safety, tolerability and efficacy
few similarities. This treatment, developed in Melbourne,                         of PBT2. Final results are expected in 2013.
has demonstrated both the ability to protect and restore
function to damaged brain cells, which is very promising
for those with Huntington's."

                                                2011 Fall Amaryllis Sale!
     Amaryllis bulbs are among the easiest bulbs to grow indoors and the most rewarding. These premium
     Dutch bulbs need minimal attention but you will be rewarded with spectacular blooms to brighten up the
     dark winter days. Planting Amaryllis and watching them grow is a fun activity for the entire family.

     Each Amaryllis kit will contain: One 26/28cm Amaryllis Bulb, decorative pot, professional growing medium,
     and planting care and aftercare instructions. Each box costs only $10.00

     You may place your order online by going to or call 1-800-345-HDSA. Amaryllis’ will
     begin shipping after October 18 and will continue until the end of December. The following varieties are available:

               Red Lion (solid Red)
               Apple Blossom (Pink/White)
               Athene (solid White)
               Minerva (Red/White)
               Assorted (Case ONLY)…6 Red Lion, 3 Apple Blossom, 3 Athene, 4 Minerva

     Please remember that 50% of your purchase helps support HDSA’s fight to improve the lives of people affected by HD and their
     families. If you have any questions, please call Mynelly Perez at or 212-242-1968, ext. 214.

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                            9
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                        FALL 2011

                            10th ANNUAL HDSA GOLF OUTING…
                                   A SUCESSFUL EVENT
         th                                                                       th
The 10 Annual HDSA-Illinois Chapter Golf Outing was held August 7 at the Antioch Golf
Club. We had a beautiful day for the most part but did get a little rain (more like a downpour)
for about 15 minutes, but this did not discourage our golfers as everyone was able to get in
18 holes of fun golf. We had 60 golfers, or maybe I should say some duffers attended the
event. We also had 40 guests for the dinner after golf. This was the best attendance over
the last 10 years. We thank all that attended and helped make this a successful event.
There was a 50/50 raffle and a “Sand Trap Auction” during dinner which was of great help in
raising additional funds. We also sold “Mulligan’s”, for our duffers, and this also increased
our revenue. A fun day was had by all that attended, good food, enjoyable golf (for most)
and good friends.

This year we had 30 sponsors contributing to our success. We hope that if you might be
able to use their products and services you will support them as they are helping to support HDSA. These Sponsors are
as follows:

Anthony Buick-Buick                                   Premier Lighting, Inc            Mike Lesser Auto Sales
Gurnee, IL                                            East Dundee, IL                  Antioch, IL
847-856-3000                                          847-551-1500                     847-395-3888
Colletti Sportsmed Phsy. Therapy                      Mr. J’s Motors, Inc.             Anytyme Sanitizing, Inc
Antioch, IL                                           Antioch, IL                      Antioch, IL
847-395-6162                                          847-395-5516                     847-421-7280
MJ Mechanical Services, Inc.                          Peapod, LLC                      Anastasias Restaurant
Lake Bluff, IL                                        Skokie, IL                       Antioch, IL
847-247-4431                                          847-583-9400                     847-395-3939
Outreach H.D.Clinic                                   State Bank of The Lakes          Belcaster Comm. Contractor
John H. Stroger, Jr,                                  Antioch, IL                      Chicago, IL
Hospital of Cook County, Chgo,IL                      847-395-2700                     312-879-9900
Northern Door Company                                 Donato Industrial Sales          Financial Insurance
Antioch, IL                                           Antioch, IL                      Administrators
800-975-3667                                          847-395-6557                     Madison, WI
Wayne Hummer Trust Co                                 Raymond Chevrolet-Kia            Antioch Chrysler-Dodge Jeep
Western Springs, IL                                   Antioch, IL                      Antioch, IL
630-321-2186                                          847-395-3600                     847-395-0200
The Wild Family                                       The Marchetti Family             Impressions Count Printing
Chicago, IL                                           Lindenhurst, IL                  Antioch, IL
State Farm Insurance                                  Twisted Cow Ice Cream            Massage Envy
Lindenhurst, IL                                       Lindenhurst, IL                  Hoffman Estates, IL
Antioch License Service                               The Madigan Family               Partylite-Charlotte Rybarczyk
Antioch, IL                                           Antioch, IL                      Rolling Meadows, IL
Steve Richards                                        Grand Geneva Resorts Spa         Twin Lakes Country Club
Beach Park, IL                                        Al Zuehlsdorf-Golf Pro           Twin Lakes, WI
                                                      Betty West
                                                      Antioch, IL

Once again "A BIG THANK YOU" to all who participated and those that sponsored our event.

Gus Marchetti
Golf Committee Chairperson

Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                       10
Huntington’s Disease Society of America – Illinois Chapter Quarterly Newsletter                                                  FALL 2011

                                 SUPPORT GROUP MEETINGS
                          Date/Time                               Additional Information                     Contact Information
   South                  2 Tuesday of odd months                 2011 Meetings: 01/11, 03/08, 05/10,        Maryann Moynihan
   Suburban               TIME: 7:00pm                            07/12, 09/13, 11/08                        (708) 955-3080 (cellular)
                          LOCATION: Thomas Cellini                                                 
                          Huntington’s Foundation
                          3019 East End Avenue,                                                              TCHF Office (877) 687-8243
                          South Chicago Heights
   Stroger-Cook           2 Thursday of every month               Group includes Medical Professionals       Stephen Clingerman, Ph.D.
   County                 TIME: 12:00 to 1:20pm                   (i.e., Neurologists, Psychologists,        (312) 864-6083
                          LOCATION: Basement by                   Social Workers, Genetic Counselors)
                          cafeteria - LL661                       as well as members of the Board of the
                          1835 W. Harrison                        Illinois Chapter.
                          Chicago, IL
                                                                  Call for 2011 meeting
   Central                2 Sunday of the even                    2011 Meetings: 04/10, 06/12, 08/14,        Dave or Susie Hodgson
   Illinois               months.                                 10/09                                      (630) 386-3928
   (formerly Peoria
   Support Group)         St. Joseph Medical Center
                          Bus. Conf. Center – Room 2
                          2200 E. Washington Street
                          Bloomington, IL
                           rd      th
   Geneva                 3 or 4 Sunday of odd                    Whether you have HD, are at risk, are      Ann Liszka
                          numbered months                         a caregiver or a friend, or just someone   (630) 761-8596
                          TIME: 2:00 to 3:30pm                    who wants to know more about HD,
                          LOCATION: Delnor-                       you are welcome.
                          Community Hospital, 300 S.
                          Randall Road, Conference                2011 Meetings: 01/23, 03/27, 05/15,
                          Rooms A&B, Geneva, IL                   07/24, 09/25, 11/20
   Lake County            2 Monday of every month                 Conference Center / Day Center             Marilyn and Barry Kahn
                          TIME: 7:00pm                                                                       (847) 975-2403
                          LOCATION: Advocate                      Call for additional information and
                          Condell Medical Center, 801             directions.
                          Milwaukee Ave., North Tower,
                          Libertyville, IL
   Quincy                 2 Sunday of the even                                                               Barb Hilgenbrink
                          months                                                                             (217) 224-0115
                          TIME: 2:00 to 4:00pm
                          LOCATION: Blessing
                          Hospital, 1400 Broadway,
                          Conference Room G
   Rockford               2 Sunday of every month                 Use the main entrance - second one         Kathie
                          TIME: 2:00pm                            back from the parking lot entrance. As     (815) 877-0324
                          LOCATION: OSF St. Anthony               you enter the building you'll see a
                          Medical Center, 5666 E. State           counter staffed by volunteers. Turn
                          St., St. Anthony Room                   right, before you reach the counter-the
                                                                  St. Anthony Room is straight ahead.

                                                                  Open to people with HD, family
                                                                  members, caregivers, and interested

                          Let us know if you plan to attend an upcoming meeting. We can keep you up-to-date on any changes.

Phone Support: Jennifer Wegener 312-914-3612
Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL 60008, 630-443-9876                                                                  11
                                                                                       NON PROFIT
                                                                                      U. S. POSTAGE
                                                                                       CHICAGO, IL
                                                                                       CHICAGO, IL
  ILLINOIS CHAPTER (630) 443-9876                                                      Permit No. 147
  P.O. BOX 8383, Rolling Meadows, IL 60008
  P.O. BOX 8383, Rolling Meadows, IL 60008
                                                                                 Dated Material...Don’t Delay
FALL 2011
FALL 2011
                      Mark your Calendar
                      Mark your Calendar
  February 11, 2012
  February 11, 2012   SAVE THE DATE: HDSA Hearts for Huntington’s Dinner Dance
                      SAVE THE DATE: HDSA Hearts for Huntington’s Dinner Dance
  March 12, 2012
  March 12, 2012      SAVE THE DATE: HDSA Illinois State Convention
                      SAVE THE DATE: HDSA Illinois State Convention
  May 20, 2012
  May 20, 2012        SAVE THE DATE: HDSA Team Hope Walk for a Cure
                      SAVE THE DATE: HDSA Team Hope Walk for a Cure

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