HDSA Re-Prom: Celebration of Hope
Saturday March 3rd, 2012
Monona Terrace Madison
Wisconsin State Conference
Saturday April 21st, 2012
Country Springs Resort
HDSA National Convention
Las Vegas, Nevada
3rd Saturday of every month
10:30am to noon
Froedert Hospital West
9200 W. Wisconsin Avenue Contact Jean Morack 414-257-9499 or 877-330-2699
2nd Saturday of every month
10:30am to noon
8301 Old Sauk Rd
Contact Jean Morack 414-257-9499 or 877-330-2699
Marshfield Respite Care Center
Wesley Methodist Church
205 3rd St
Contact Marilyn Seidl-Kramer for future meetings
1st Saturday of every other month
1 pm - 3pm
Faith Baptist Church
350 N. Stephenson Ave.
Contact: Christine at Salew40@new.rr.com
Faith Baptists Church
350 N Stephenson Ave
Contact Christine Salew40@new.rr.com
10:30 am to noon
Aurora Health Center
855 N. Westhaven Drive
Contact Debbie Zwickey facilitator 920-456-2030
Meeting dates: Nov 9, Dec 10, Jan 7, Feb 4, March 3, April 14
HDSA Wisconsin Supporters
In Memory of Ruby Steger
Gary & Julie Beyer
Kathy & John Ciske
Marie Damie & Dallas Thompson
Jane & Joe Doro
Kathy & Mike Egan
Tom & Terri Graverson
Susan & David Lee
Gary & Mary Ludwig
Mary & Joe Mares
David & Sharon Mooney
Marion & Richard Peterson
Ann & Tom Powell
Linda & Jack Schindhelm
Bruce & Sue Steger
Mary & Gary Van Linn
Gary & Barbara Webb
Lynn & Mark Williamson
Bill & Kay Wingen
In Memory of Rose Cianciolo
In Memory of Henry F. Wenzel
In Memory of Jeff Stockert
Richard & Marilyn Synek
J.P. Simons & Company
Mr/Mrs J Joers
Mr/Mrs Lou Prezesmicki
A Note From the President
|President: Caitlin Bradfield|
I cannot believe it is fall already! What another exciting year we have had for HDSA - Wisconsin! Thanks to the help of Ann Moll, we've raised almost $50,000 through our three Team Hope events around the state. Not only that, we also brought together many families struggling with HD for a GREAT cause and fun day.
People frequently ask, "Where does all of this money go?" Of course some of it gets sent back to HDSA National for research toward treatments and a cure, but much of it also stays right here in Wisconsin to help YOU. Looking at the lefthand column of this newsletter, you will see various support groups for you to attend. We have many outstanding social workers right here in Wisconsin for your help and support, so please take advantage! Under the "Events" section, you will also see that the date for our 2012 State Conference is Saturday, April 21st. This is another day designed for YOU to gain as much knowledge as possible about science updates, treatments, caregiver resources, and a chance to find others in our support network to help with coping. For the first time ever, our state conference will have a day long youth track. So please make sure to get the date on your calendar and plan on bringing the kids! The youth of today are our hope for tomorrow.
So as always, I would like to encourage you to attend as many of our fundraising events as possible, but please don't forget about all of the resources provided by us that are available to you.
On behalf of the Wisconsin board, we want to thank you so much for all of your support in 2011! Let's shoot for another amazing year in 2012!
If you have any questions, comments, concerns, or ideas for our HDSA Wisconsin Board, please contact me at Caitlinmb22@gmail.com
Huntington Study Group Workshop
Fifth Annual Huntington Disease Clinical Research Symposium
Organized by the Huntington Study Group
Saturday, November 5, 2011
8:00a.m. - 12:30p.m.
Hyatt Regency Indianapolis
Indianapolis, Indiana 46204 U.S.A.
Huntington disease (HD), a devastating disease that robs people of their mobility, intellect, and sanity, has resisted attempts at treatment since it was first recognized in 1872 as a distinct genetic ailment. Now, some 135 years later, clinical research into treatments that might alleviate symptoms and/or modify the disease are finally producing glimmers of hope for patients and families affected by the disease.
In recognition of the emerging focus on patient-oriented research, the Huntington Study Group (HSG), comprised of clinical researchers from North America, Europe, Australia, New Zealand and South America, will convene the Fifth Annual Huntington Disease Clinical Research Symposium, to be held on Saturday morning, November 5, 2011 at the Hyatt Regency Indianapolis, Indiana. Poster viewing will be held from 8:00-9:00am with the Symposium officially beginning at 9:00am.
The Symposium will feature keynote addresses by:
- Mary Edmondson, MD, Duke University Medical Center
- Karen Anderson, MD, University of Maryland
- Karen Marder, MD, MPH, Columbia University
In addition to these keynote addresses, clinical scientists will be presenting their original research on relevant topics of interest to the HD community today. The Symposium will conclude with an open panel discussion, which will present audience members with the opportunity to interact with the day's presenters.
The Symposium is open to the HD community, the public and the press. Pre-registration by October 24th is free. On-site registration is $25.00 and is payable by cash or check at the event.
Scientific Program Committee Leadership
Andrew Feigin, MD, Chair
Feinstein Institute for Medical Research
Blair Leavitt, MD, Co-Chair
University of British Columbia
Please join us after the Symposium for....
Working Together for HD Treatments:
A Clinical Research Workshop
Saturday, November 5, 2011 * 1:00-3:30pm
Presented by the:
Huntington Study Group* Huntington's Disease Society of America* Huntington's Disease Drug Works
The Focus: The importance of clinical research in the development of new treatments that make a difference for HD.
Featured Speakers: Joanne Wojcieszek, MD, Indiana University
Charles Sabine, NBC News Correspondent
Also featuring an open audience discussion covering key questions on motivations and concerns about participating in clinical research and an opportunity to meet and speak with local clinicians.
Everyone welcome. The HSG will be providing complimentary valet parking at the Hyatt Regency for Symposium/Workshop Attendees.Lunch provided to all registered participants.
Both of these events are FREE and lunch is provided if folks pre-register online. It's easy ... simply register for the Symposium Workshop here.
Holiday Amaryllis Sale
Can you believe it's time to get ready for the Holidays already??!!
'Tis the season for giving the beautiful amaryllis flower in support of the Huntington's Disease Society of America! The Wisconsin Chapter receives about $5 per flower sold which then aids in local family care, education, and research. Personally, I use these flowers as holiday gifts for friends, family, and clients. Everybody loves a beautiful flower that blooms again and again! Please consider either ordering one or a few flowers through hdsa.org or even better, ordering a case directly through me to sell at work, school, church, etc.!
We encourage everyone to participate in this Campaign. Individual kits are $10 each and contain an amaryllis bulb, decorative pot, professional growing mix, and planting care and instructions. You can order individual kits at http://www.hdsa.org/amaryllis (shipping charges will be added).
This is a great way to send an amaryllis to friends or family members who are out of town. A gift note will included.
Case orders (16 kits per case) are shipped directly to your home or business for $160 (free shipping). For orders of 5 or more cases, the case price is $145. It is now possible to customize the colors in your case if you find that the assorted case doesn't quite suit your needs. Or, you can split an order with a neighbor or friend.
Amaryllises are ideal gifts for Christmas, Chanukah, Housewarmings, Get Well or Birthdays. They are also great gifts for friends, teachers, clients, colleagues or customers. When "checking out" with your order, be sure to select the WISCONSIN Chapter of HDSA so that we get credit!
To order directly through HDSA-Wisconsin, please send an e-mail to: firstname.lastname@example.org
Caregiver Tips: About Wheelchairs
The importance of choosing the right type of wheelchair cannot be overstated. Selecting an appropriate wheelchair prolongs mobility, prevents deformity, conserves energy, and allows the individual with HD to do many activities without help. A poorly selected wheelchair can discourage mobility, contribute to deformity, and jeopardize safety.
Many people with HD have an easier time propelling a wheelchair with their feet than they do with their hands. If this is the case, your physiotherapist will likely recommend a "hemi-height" or "drop seat" wheelchair so that the person can firmly plant his feet on the floor.
It may be very difficult to find an appropriate wheelchair or "seating system" for some individuals. They have involuntary movements, rigid or fluctuating muscle tone, unstable posture, and an inability to modulate the force of their movement. One option is the Broda semi-reclining chair. It has a wide base of support, can be pushed easily in any direction, has a deeply angled seat, and is padded to prevent injury. Its frame is made of tubular steel and covered with a plastic webbing with a lot of "give." New models allow the chair to tilt so that the user's position can be easily changed and pressure spots relieved. Bands that lie across the thighs to prevent the user from sliding out of the chair can be attached to it. Chest pads for those needing additional trunk support are also available. This chair, as well as other adapted or specialty chairs, are widely available and often reduce the need for other restraints.
Selecting a Wheelchair
Selecting an appropriate wheelchair is a team effort involving the person using it, his caregivers, his physician and his physiotherapist. To determine the best wheel- chair, physiotherapists make these considerations:
- Does the chair restrain the person as little as possible?
- Does it allow enough room to move freely and without injury?
- Are its hard surfaces and sharp edges padded?
- Does it allow the user to get into and out of it easily?
- If appropriate, does it provide independent mobility?
- Does it offer solid steady support for the feet?
- Does its height allow it to be used at a table or with a lap tray?
- Will involuntary movements cause the chair to tip over?
Adapted from Lori Quinn, Ph.D., PT
Source: A Caregiver's Handbook for Advanced-Stage Huntington Disease by Jim Pollard
Advocacy Update: 5 Ways to Advocate From Your Home
We are up to 92 cosponsors of H.R. 718 in the House, including Tammy Baldwin (2nd) and Gwen Moore (4th), and 7 cosponsors in the Senate! We need your help to secure additional cosponsors! Here is how YOU can participate!
- Use the HDSA E- Advocacy Center, www.hdsa.org/takeaction to contact your Rep and Senators about cosponsoring the HD Parity Act (S. 648/H.R. 718) with just a few mouse-clicks!
- Call Congress for HD! Go to www.hdsa.org/callcongress to get the phone numbers for your Senators and Representative, as well as talking points.Then, tell up to 10 friends to also call by using the Tell-A-Friend link at the bottom of the page.
- Educate the Media! Use the HDSA E-Advocacy Center, www.hdsa.org/takeaction 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 email@example.com for a printed letter you can adapt, and local newspaper information.
- Develop Relationships!
Send a copy of your letter to the staff person responsible for healthcare. Contact Jane Kogan at firstname.lastname@example.orgĀ for Congressional health staffer information.
- Make it local!
Schedule a District meeting with your Representative or Senators. Contact Jane Kogan for information about setting up a local meeting.
Jane Kogan email@example.com
A New Biomarker is Identified for HD
Researchers in two Massachusetts laboratories have isolated a potential new biomarker in the blood of mouse models of HD and in human patients, the dynamic regulator of chromatin
plasticity H2A histone family, member Y (H2AFY). Chromatin is the combination of DNA and proteins that make up the contents of the nucleus of a cell. The primary protein components of chromatin are histones that organize the DNA. Chromatin architecture is known to be dysfunctional in HD patients and the elevated levels of H2AFY may be related. Although more research will be needed before the biomarker can be accepted for clinical studies, the results presented in this study are very promising.
The search for biomarkers is very important to promoting the development and availability of treatments. Because HD is a slowly progressive disease, Phase III clinical trials of potentially disease modifying drugs take years, adding to the cost of trials and delaying the time needed before successful drugs can become available to patients. A valid biomarker could shorten the time necessary for trials and also help to identify which drugs should be taken from Phase II to Phase III (final) trials.
The HD pipeline of potential treatments continues to grow; with limited resources (money and patients willing to volunteer for trials) it becomes important to prioritize which drugs are tried first. Given the short time periods associated with Phase I and Phase II trials, clinical differences are not usually detectable so prioritizing is difficult. When researchers examine a number of potential possible differences after a Phase II trial looking for signals whether to proceed, false positives become likely, as was the case with Dimebon. A significant improvement in the Mini Mental States Exam following a Phase II trial was encouraging but Dimebon was later found ineffective in a Phase III trial. In addition, once treatments become available, biomarkers will also be helpful in determining when to start administering treatments.
The new study is exciting since there the biomarker was confirmed in mice and patients and was found to respond to a treatment. Further, as the researchers point out, a blood test is less invasive and less expensive than other possible tests of disease progression such as examining the cerebrospinal fluid or imaging.
In a systematic transcriptome-wide analysis of the blood of HD patients compared to controls, the researchers found that H2AFY was found to be overexpressed 1.6 fold. A second study of HD patients was done to make sure that the original finding wasn't a false positive; overexpression was 1.5 fold. A longitudinal study found 1.4 at the baseline, 1.4 a year later, and 1.7 a year after that. In addition, elevated levels were found in both the R6/2 mice and the knock-in mice.
The researchers then looked at the effect of sodium phenylbutyrate (SPD) on levels of H2AFY in mouse models and HD patients. SPD is a histone deacetylase inhibitor. Histone deacetylase (HDAC) inhibitors are of interest as potential treatments because of the possibility that they could restore the dysregulation of gene transcription that occurs in Huntington's disease. SPB has already been shown to be neuroprotective in the R6/2 mice. They found that SPB reduces the elevated H2AFY levels in the R6.2 mice, showing that this biomarker responds to treatment. They also examined frozen blood samples from the Phase II trial of SPB which took place several years ago and found that the biomarker also responded to treatment in human patients.
SPB did not advance to Phase III trials because at the time of the study there were no indications of effectiveness and because basic researchers were attempting to determine which HDACs should be inhibited with the idea of developing a drug with a narrower target.
The new research is a collaboration between the laboratory of Clemens Scherzer, MD, in the Center for Neurologic Diseases at Brigham and Women's Hospital (BWH) and the laboratory of Steven Hersch, MD, Ph.D, at the Massachusetts General Institute for Neurodegenerative Disease at Massachusetts General Hospital (MGH).
"We know how to diagnose HD. What we don't have, however, is a simple test to tell us whether the disease is active and progressing or responding to new medications. Such a test would be critical for making clinical trials more efficient. We are excited about the potential of our discovery" said Scherzer, who is also an assistant professor of Neurology at Harvard Medical School. "The next challenge will be to develop this prototype biomarker into a test that is useful in drug trials."
"Our findings, taken along with previous research, suggest that Huntington's disease progression and patient responses to some treatments could be measured by a blood test and that this biomarker gene, H2AFY, could help to facilitate research into the effectiveness of potential treatments for this disease," said Hersch, who is also a professor of Neurology at Harvard Medical School. "Even in very large studies lasting years, it is very difficult to use clinical measures to find evidence that a treatment might slow down Huntington's disease. Biomarkers like H2AFY can help considerably."
The Crest-E (creatine) trial will allow H2AFY to be followed longitudinally in a larger population of HD patients. Future research will also look at whether H2AFY is a biomarker which responds to any disease modifying treatment or just transcriptional treatments.
Yi Hua, Vanita Chopra, Raman Chopra, Joseph J. Locascio, Zhixiang Liao, Hongliu Ding, Bin Zhenga, Wayne R. Matson, Robert J. Ferrante, H. Diana Rosas, Steven M. Hersch, and Clemens R. Scherzer. "Transcriptional modulator H2A histone family, member Y (H2AFY) marks Huntington disease activity in man and mouse." Proceedings of the National Academy of Sciences 2011 Oct 3. [Epub ahead of print].
- Marsha L. Miller, Ph.D., October 12, 2011
Wanted: Children or Teens Helping a Parent with HD
To participate in a study to understand
the experiences and needs of young caregivers.
DID YOU KNOW...children under the age of 20 represent a large portion of caregivers in the US, including to parents with HD, but no local/state/or national programs are designed to provide services or support to these children?
If you have a child under 20 who helps their parent with HD
You are under 20, and have a parent with HD,
You can take part in this new research designed to help create programs and supports for children who care for their parent with HD.
What is involved?
A one-time only, confidential 45-60 minute interview with the child.
All interviews are conducted wherever is convenient for the teen and can even been done over the phone or skype!!
Teens who participate will receive a 10.00 gift card!
For more information, or to be a part of the study
Melinda Kavanaugh, MSW, LCSW
Host A Fundraiser!
Do you feel your area is lacking in fundraising activities? Don't be shy, host your own!
- Golf Outing
- Pig Roast
- Bowling Tournament
- Bake Sale
- Local Grants
- Or something unique and exciting for your community!
If you do decide to host your own fundraiser for HDSA-Wisconsin, you will not be alone. Please contact your board (firstname.lastname@example.org) for support in promotion, marketing, volunteers, and more!
TEAM HOPE Run/Walks in Wisconsin
What a great year for Team Hope walk/runs in Wisconsin!
Team Hope Madison
On May 7th, Madison kicked off the year with their walk/run, we had a record turnout of 124 participants with 11 teams and we raised $14,600 at Vilas Park, our new location. We ran and walked the scenic neighborhoods surrounding the park and some participants even went to the Lincoln Park Zoo afterwards. Our top 3 fundraisers were Sheila Williams $4,167 (Williams Family & Friends), Stephanie Bernander $1524 (Team Holcomb) and Anthony Lutz $1220 (Team Nittany Lions). And yes, the bouncy house was enjoyed by all. :)
Team Hope Fox Valley
We raised $17,020 at the 2011 HDSA Team Hope Fox Valley walk/run! This amount includes anticipated company matching gifts. We had 158 people and 12 teams.
Here's what our team's raised:
Team Gio $6469.07
Team Dirty Dogs $2750
Team Green Bay $2587.31
Team FaithinHope $2571.38
Team Atkins $2006.15
Team Mueller $511.54
Team Shady Springs $350
Team mTT-Lisa $135
Team End HD $70
Team Worthington $50
Team Incognitos $25
We can't thank you enough for all the awareness of Huntington's disease and money that you have raised! We surpassed last year's funds by over $1500!
I also want to specially thank Gina Giordana Krueger who is new to the committee, Jenny Beek, Lori & Chris (MC) Jones, Dr. Kelley Parnell, Jacci Ziebert, the awesome 5 Kohl's volunteers and Lundbeck for their national sponsorship for the Team Hope events. All these people made our walk/run possible.
HDSA Team Hope Coordinator
Support HDSA Wisconsin
Please help HDSA Wisconsin fund our newsletters, support groups, website, and social workers. Donations are also accepted online at: https://www.hdsa.org/wish/widon.html
Checks can be mailed to:
Attn: Jean Morack
2041 N. 107th Street
Wauwatosa, WI 53226
Checks payable to: HDSA-Wisconsin