HDSA-Wisconsin Hearts for Huntington's Sale
All over the State!
Hearts for Huntington's Dinner Dance
Saturday February 12 2011
The Bristol Court -
823 East Rand Road
Mt. Prospect, IL
The Blast Cocktail Reception
Illinios State Conference
March 6, 2011
Allgauar's Hilton Hotel
2855 Milwaukee Ave
Northbrook, IL Wisconsin State Conference
Saturday April 2nd
Country Springs Hotel
More info to come
HDSA National Convention
June 24th - 26th 2011
Bloomington, MNwww.hdsa.org Davis Drewiske Hockey Fundraiser
Friday July 15th 2011
More info to come!
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
*No January Meeting for Madison*
2nd Saturday of every month
10:30am to noon
8301 Old Sauk Rd
Contact Jean Morack 414-257-9499 or 877-330-2699
Contact Jean Morack 414-257-9499 or 877-330-2699
1st Saturday of every other month, beginning in February
1 pm - 3pm
Faith Baptist Church
350 N. Stephenson Ave.
For WI & MI residents
Contact: Chris 715-938-5902
Contact: Greg 715-789-2526
Faith Baptists Church
350 N Stephenson Ave
Feb 6, Ap 3, June 5, Aug 7, Oct 2
Contact Christine Salew40@new.rr.com
Jan 8, Feb 5, March 12 & Ap 9
10:30 am to noon
Aurora Health Center
855 N. Westhaven Drive
Contact Debbie Zwickey facilitator 920-456-2030
|HDSA Wisconsin Supporters|
In Memory of Kathy Griger:
Ladish Co Foundation
Motion Plus Lanes
Jeanette Vander Kooy
Michael& Kristine Fojtik
James & Carol Bryant
Randy & Kathy Hahn
In Memory of Mary Beth Lutz:
Oak Brook, IL
Jos & Maria Monica
Jennifer& Paul McTyre
Chris & James Serres
Shirley & Faye Peoples
In Memory of Jack Schaller & In Recognition of the Becker Family:
In Memory of Arthur Mueller
& Cheryl Robinson:
Shirley & Raymond Klamrowski
In Memory of Bonnie Sherman:
In Memory of Jerry Habanek:
Jim & Darlene Habnek
Sandra & Jim Fryda
Bill & Laura Horsch
Gary & Shirley Ambrose
A Note From the President
|President: Caitlin Bradfield |
Dear Wisconsin Friends and Family,
I am excited to announce that I was recently elected as your new board president. As such, I would like to take a moment to introduce myself. I've been active with HDSA Wisconsin for the past three years as a board member and board secretary. Since my father's diagnosis six years ago, I've dedicated my heart and energy to supporting families struggling with this disease and fundraising to help find a cure.
We also have many new faces on our board who I would like to introduce you to!
|Vice President: Stephanie Bernander - Belgium, WI |
|Treasurer: Katie Verstegen - Madison, Wisconsin |
|Secretary: Shana Martin - Madison, Wisconsin |
|Board Member: Christina West - Shorewood, Wisconsin |
|Board Member: Melinda Kavanaugh - Sauk City, Wisconsin |
|Board Member: Megan Wood - Waukesha, Wisconsin |
What an outstanding group of women!
We would like to thank our former board members with expired terms for their years of service and dedication to HDSA-Wisconsin:
Carla De Lucca
We are enormously grateful and hope you will all remain involved with HDSA-Wisconsin...and possibly be back on the board after a short break!
As always, we are looking for motivated individuals to join us on the board. If you aren't quite up for board membership, we are also looking for members for the following committees: Family Services, Fundraising, Advocacy and Grants, Marketing, Education/Outreach, and Finance. If you have interest in any of the above, please send me an e-mail and we will get you started!
2010 was a great year as our services, events, and communication continue to grow. I am very excited for 2011 and hope you are all able to get out there and get involved as much as possible!
If you have any questions, concerns, comments, or ideas for our HDSA Wisconsin Board, please feel free to e-mail me directly at: firstname.lastname@example.org
From the Desk of Louise Vetter, HDSA's Chief Executive Officer
Since 1994, when the very first clinical trial was conducted to examine the safety and tolerability of an experimental antioxidant (OPC-14117 in patients with manifest HD), the pace of clinical research and the quest for effective treatments that will slow the progression of HD has accelerated. Today the potential of clinical research is one of the most discussed topics in the HD community.
With 6 clinical trials ongoing or gearing up for recruitment, the need for volunteer participants has never been as high. Unfortunately, good products cannot come to the marketplace if they do not pass through a rigorous testing process mandated by the Food and Drug Administration (FDA). To succeed, participants are needed in each phase of the clinical trial process with the largest number needed for the final or phase 3 trials.
At the same time, researchers are using observational trials to identify biomarkers and to define the earliest biological and clinical features of HD before at risk individuals exhibit diagnosable symptoms of the disease. This work will assist in determining whether a new drug or treatment is actually effective more quickly in the clinical trial process. They too need participants who meet the criteria for their studies.
HDSA has been a driving force in both observational and clinical research throughout. Both PHAROS and PREDICT-HD, two observational studies, began with seed grants from HDSA in 1999. Using data generated as a result of that grant, the National Institutes of Health (NIH) awarded the PREDICT-HD investigators a five year multi-million dollar grant which was renewed and expanded in 2005 and again in 2009.
Additionally, many completed clinical trials that examined compounds such as cystamine, minocycline, creating, and phenylbutyrate began as preclinical studies conducted by HDSA Coalition for the Cure investigators and funded by you, our donors. Their early work provided efficient data to indicate that the compound could have beneficial qualities for people with HD. Though none of these compounds proved ultimately to exhibit a benefit across a large cohort, they did usher in a new era in clinical research and spurred interest in HD research by others.
Today we stand on the threshold of the future, but we cannot move forward without your continued support. Now more than ever, your gift is needed to help support the work of HD researchers in their quest for treatments that will slow or prevent the onset of HD as well as the development of essential tools that can help to prove the efficacy of a treatment earlier in the clinical trial process.
Thanks to your commitment to HD research and best wishes for a happy and healthy holiday season.
Chief Executive Officer
Keeping Communication Lines Open in Advanced Stage HD: Caregiver Tips
HD impairs communication in many ways. Speech is affected. The ability to organize thoughts and present them in an orderly way is compromised. Sometimes individuals with HD speak to you through the nonverbal messages of anger, withdrawal, and short temper. Remember that the messages are there for you. To communicate you will need to develop skills in decoding both verbal and nonverbal messages to you and others around.
Have the person with HD:
- Slow down, especially if his speech has a "racing" quality to it.
- Say the main word.
- Spell the word.
- Write the word, even if he can write only a few letters.
- Show you.
You, the caregiver should:
- Try to rephrase the main idea.
- Use short sentences.
- Ask for feedback.
- Allow plenty of time.
- Wait... for up to a few minutes...for a reply.
- Try not to repeat or rephrase a question while you're waiting for a response.
- Use touch to help keep him focused on the conversation.
- Ask for help from others when needed.
- Never pretend to understand!
- Consider using a simple communication board.
The family can:
- Make a scrapbook or memory book.
- Tell you about facial expressions or phrases that they understand.
- Continue to call or write even if he cannot respond clearly.
Source: A Caregiver's Handbook for Advanced-Stage Huntington Disease by Jim Pollard
Introducing: HDSA Equipment Board!
HDSA is pleased to announce an addition to the Living with HD section of the national website. The new online Equipment Exchange Board is designed to facilitate the sharing of durable medical equipment such as Broda chairs and beds, wheelchairs, walkers, hospital bed accessories, and assistive mobility devices. The Equipment Board offers a forum for families to support one another by posting information about durable medical equipment they no longer need.
The Equipment Board is simple to use, and designed to promote direct collaboration between individuals seeking medical equipment, and those who no longer need it. To post your used equipment, or to see what is available, just go to the Living with HD section of the HDSA website, www.hdsa.org. You can also click here to post medical equipment, or click here to find equipment. Please note that Donation receipts cannot be issued for posted equipment. HDSA does not participate in any equipment transaction, nor can it take possession of posted equipment or offer advice about the suitability of equipment for your loved one. Please contact Jane Kogan if you have any questions at Jkogan@hdsa.org.
What the Election Results Mean For You
Whether you are a Republican or a Democrat, this was an exciting election for the HD Community. Together, we generated over 10,000 letters to Congressional candidates, and received over 180 respondents. Thirty seven of the candidates who responded were elected last Tuesday, which gives us an opportunity to cultivate new allies for the Huntington's Disease Parity Act (HR 678). Below is a summary of those election results and what the new Congress means for HD advocates:
Starting Over (but with a Headstart) - All bills that have not become law by the end of a congressional session must be reintroduced in the next session of Congress. For us, this means that Representatives Bob Filner and Brian Bilbray will have to reintroduce the Huntington's Disease Parity Act in early 2011. As a result, you will need to convince Rep. Tammy Baldwin to cosponsor the new bill. Of course, we won't be starting from scratch, but we will need the help of our entire advocacy community. Please tell your friends and family to take action now at http://www.hdsa.org/takeaction to remind our new Republican leadership that HD matters. Then, please encourage everyone you know to join HDSA's action E-list at http://capwiz.com/hdsa/mlm/signup/.
Leadership Change - As you likely know, the Republicans gained control of the House of Representatives. HD is a nonpartisan disease supported by members of both parties. However, there will likely be renewed vigor to cut federal programs and to oppose legislation that costs money. That said, the HD Parity Act is relatively inexpensive (click on the link to download a cost estimate).
Hello Goodbye - Last week's election, as well as retirements, swept a lot of incumbents out of office. Included among them were nearly 30 cosponsors of the HD Parity Act (HR 678). Replacing them will be at least 15 new Senators and 72 new Representatives who will have to be educated about HD by their community. Click here to learn more about the new members of Congress in your area. The good news is that 37 candidates who returned our candidate questionnaire were elected to Congress. You can help educate Congress about Huntington's Disease by sharing your story through the National Health Council's Put Patients First campaign. Just click on the link to share your story, and show our policy makers the true face of Huntington's Disease.
But one thing hasn't changed: the power of our grassroots. Our success this year has been built on your letters, calls, meetings and messages. And that power will help us continue to build support for HD in Washington, regardless of the election results and new faces in Washington, DC. The dust is still settling, and we are still analyzing what the election results will mean. HDSA will be looking more in depth at what the changes might entail for the HD community, both for the remaining weeks of this Congress and for next year, so please stay tuned, and don't hesitate to contact me with any questions you may have.
Jane Kogan, MSW
Manager, Advocacy & Program Services
Huntington's Disease Society of America
p: (212) 242-1968 extension 226
f: (212) 239-3430
Everoliimus Not Neuroprotective in R6/2 Mice
|Dr. Hersch |
Everolimus is an inhibitor of mTOR (mammalian target of rapamycin). Inhibiting mTOR has been previously found to lead to an increase in macroautophagy (commonly referred to as autophagy) which is of interest to HD researchers as a possible way to clear away the HD protein which accumulates in cells. Autophagy is a very old cellular house cleaning process found in organisms from yeast to mammals. Damaged parts of the cell, pathogens, and large proteins are surrounded by autophagosomes. The autophagosomes deliver their cargo to the lysosomes by fusing with them. The lysosomes then consume the material.
Everolimus is approved for advanced kidney disease and as an immunosuppressant for transplant patients. The researchers were interested in finding out if this drug would be an effective treatment for Huntington's disease since it is already available for these other purposes.
Everolimus was found to have penetrated the brain as measured by decreased phosphorylation of the mTOR target protein S6 kinase. However, autophagy was not upregulated in the brain as it was in the muscles as measured by normalized levels of the cystolic protein LC3BII which is associated with autophagosomes. Levels of soluble HD protein were reduced in muscle tissue but not in the brain. No signs of neuroprotection were found as measured by brain weight, striatal volume, or striatal neuronal cell body volume. Rotarod performance, a standard measure of motor ability was improved on everolimus. The authors suggest that the positive results in rotarod performance were due to increased autophagy in the muscle tissues. Survival data was not reported.
These results point to the need to closely examine the potential of autophagy as a treatment which has looked promising since a 2004 study by Rubinsztein and colleagues. In that study, aggregate load was reduced and survival time increased in a cell model and in a drosophila model. Improvement was found in rotarod performance, grip strength, the wire maneuver test, and tremors in an N171-82Q HD mouse model. Aggregates were also reduced. However, because the study was conducted in the UK where regulations require the mice to be euthanized before end stage disease, there were no survival data.
In 2010, Rubinsztein and colleagues investigated the effects of rilmenidine on the N171-82Q mice. Rilmenidine, a drug which is FDA approved for hypertension, gets into the brain, has been safe for long term use, and was previously shown in a screening to induce autophagy through an M-tor independent pathway. The researchers found that rilmenidine reduced levels of the solutble HD protein but not aggregates in the brain. Mice treated with the drug had improved grip strength, did better on the wire maneuver test and had less severe tremors but did not improve on the rotarod test. Again, survival data could not be obtained.
The mouse modes are different in the Rubinsztein studies and in the Hersch study. Rubinsztein's N171-82Q HD mice are slower to develop symptoms and were treated before symptom onset while the R6/2 mice which have rapid onset of symptoms were treated after symptoms began in the Hersch study. The lack of survival time data and the discrepancies between the studies suggest that more questions need to be answered before autophagy inducers go into clinical trials.
Additional research is needed to determine whether autophagy inducers can increase survival time. Also raising concerns is the recent research by Dr. Ana Maria Cuervo and colleagues who found that that cargo recognition was impaired in Huntington's disease and cellular garbage wasn't getting to the lysosomes. Does autophagy clear away the HD protein or is the process itself impaired in Huntington's Disease? If so, at what point in the disease process does the impairment occur? Is there a window of time in which autophagy inducement would be an effective treatment?
We will continue to report on preclinical studies of drugs which induce autophagy as they are published.
Dr. Steven Hersch and colleagues have investigated the effect of the rapamycin derivative, everolimus, on the R6/2 mice. While there was improvement in rotarod performance and the drug did penetrate the brain, it failed to protect neurons. Everolimus reduced the HD protein in skeletal muscle tissue but not in the brain where it did not activate autophagy.
Hearts for Huntington's
February is a month for love... and for Hearts For Huntington's!
The Hearts sell for a dollar donation (or more!) and allow the donor to write his or her name on it for display of their support. These are perfect for selling at your local business, school church, grocery store, bank, fraternity, and more! If you are interested in helping us out with the fundraiser (and we hope you are!) please contact Shana Martin via e-mail: email@example.com
We will provide you with the hearts and marketing materials such as posters, window clings, and buttons. All you have to do is sell them to raise money and awareness for HDSA!
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!
The Melting Pot - Madison Supports HDSA-Wisconsin this January!
The Huntington's Disease Society of America's Wisconsin Chapter was honored to hear that the Melting Pot Madison selected us as one of their charities for 2011. For the month of January, $1 from every "Big Night Out" sold and $5 from every featured bottle of wine served will be donated to our organization.
6816 Odana Road
Madison, WI 53719
Hours of Operation:
Monday: 4:30 p.m. to 10 p.m.
Tuesday - Thursday: 5 p.m. to 10 p.m.
Friday: 5 p.m. to 11 p.m.
Saturday: 12 p.m. to 11 p.m.
Sunday: 12 p.m. to 10 p.m.
Now open for lunch on the weekends.
Open for lunch with parties of 10 or more on week days.
So get your friends together and enjoy a warm and wonderful dinner at The Melting Pot Madison!
2011 HDSA National Convention in Minnesota
Mark your calendars for June 24th - 26th 2011. This year's HDSA National Convention is right next door in Bloomington, Minnesota. We are looking forward to an enormous Wisconsin showing! Keep watching www.hdsa.org for information on scholarship opportunities.
Wisconsin Adventure Trip #2:
South Africa Bungee to Beat HD
|Nate and Shana are at it again... |
What could top summiting Mt. Kilimanjaro to cure HD? We decided that was impossible to top, but risking the world's highest bridge bungee in South Africa is a close second!
On February 23rd 2011 Shana Martin and Nate Greenberg will dive 710 feet (216 meters) off of the Bloukrans Bridge in beautiful South Africa in honor of Debby Martin, and all others suffering with Huntington's Disease.
Please help us reach our fundraising goal of $6,000. T-Shirts will be made with names of all donors who
|Known as the world's highest commercially operated bungee jump (Guinness Book of World Records) and the highest single span arch bridge in the world, the Bloukrans River Bridge is close to Nature's Valley, Western Cape, some 40 kilometres east of Plettenberg Bay in South Africa. The jump takes place from a platform below the roadway of the bridge, and the height to the valley floor is 216 metres (710 ft). Scared? You bet we are! |
donate before January 31st 2011. As always, corporate donations are welcome and appreciated!
Shana's mom suffers from this terrible disease. She is living with a 50% chance of also having HD. As board member of the Huntington's Disease Society of Wisconsin, it is her mission, along with all of the Wisconsin families and supporters to CURE THIS DISEASE! Funds raised will also go to help HD families in need.
Get your name on the T-Shirt! Visit our fundraising page HERE.
Support HDSA Wisconsin
Please help HDSA Wisconsin fund our newsletters, support groups, website, and social workers. Donations are also accepted online at: http://www.firstgiving.com/hdsa-wisc
Checks can be mailed to:
Attn: Jean Morack
2041 N. 107th Street
Wauwatosa, WI 53226
Checks payable to: HDSA-Wisconsin