September 2010

In This Issue
Upcoming Events
Support Groups
Team Hope Run/Walks
President Letter
Tom Griger Bowling Event
Patrick Blessing Memorial
HD Caregiver Survey
Caregivers' Conference
myTeam Triumph
Dimebon Study Participants Needed
Midwest Log Rolling Championships
Annual Membership Letter
Membership Dues
Quick Links
Upcoming Events
HDSA Team Hope 2K Walk & 5K Run - Fox Valley
Sunday, September 12, 2010
Riverside Park, Neenah

HDSA Team Hope 2K Walk & 5K Run - Madison
Sunday, September 26, 2010
Elver Park, Madison
Minnesota State Conference
Saturday October 2, 2010
Calvary Lutheran Church 
Golden Valley, MN
pre-register at www.hdsa.org/events
Kathy Griger 9 Pin Tap
October 16, 2010
Motion Plus Lanes
3620 E Carpenter Ave
Cudahy, WI  414 481-0200
Call to reserve a lane

Caregivers' Conference
Saturday, November 13th
Country Springs Hotel
Pewaukee, WI 
Minnesota Holiday Soiree
November 14th
Chateau LaMothe
Burnsville, MN
Support Groups

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
Attic Angels
8301 Old Sauk Rd

Contact Jean Morack 414-257-9499 or 877-330-2699


Marshfield Clinic
coming soon
Contact Jean Morack 414-257-9499 or 877-330-2699



Menominee, MI Support 

1st Saturday of every other month
1 pm - 3pm
Faith Baptist Church
350 N. Stephenson Ave.



Saturday October 2nd 10:30-Noon
For WI & MI residents
Faith Baptists Church
350 N Stephenson Ave, Peshtigo

Contact Christine Salew40@new.rr.com


Saturday - March 6,

April 17
10:30 am to noon
Aurora Health Center
855 N. Westhaven Drive, Oshkosh
Contact Debbie Zwickey facilitator 920-456-2030


If interested in this location, contact Jean Morack, chapter social worker




HDSA Wisconsin Supporters

In Memory of Mary Beth Lutz:

The Rutkosky Family
John & Lauren Bahry
Michael & Marie Bahry
Janelle Speerscheider
The McIntyre Family
Chris &Prairie Capital Advisor
Chuck & Donna Reid
Maria LaWait
James Serres
Roberta Cummings/Johnson Bank
Mary Lou Polansky
Christine Bahry
Robt & Ann Centrella
Steve & Stephanie Hron
Mary Ann & Richard Best
Shirley & Faye Peoples Jr
Carl & Rose Mueller
Donald & Helen Lane
Mr/Mrs Louis Ditore
Lorna Clause
Elizabeth McKenna
Jeanette Cuprow
Thos & Anne Lutz
Lisa & Jon Jansen
Rainer & Marjorie Gedeit
Michael & Amy Vanderzanden
Carol & Jeffrey Lewis
Paul Gustafson
Terrence & Debra Alexander
David & Loretta Weinheimer
Robert & Josephine Lutz
In Honor of Shana Martin:
From Duane Christoph
In Memory of Theodore Ginster:
Martin Schreiber
In Memory of Dale Porbreg:
Kathleen Cianciolo

In Memory of William Jacobsen:
AM General
In Memory of Ted Ginster:
Oilgear lodge No 1845, IAMAW

In Memory of Jerry Habanek:
Jim & Darlene Habnek

In Memory of Julie Allison:
Bridget Malesyticki
Teresa Fenne

Other Donors:
Bill Rinehardt
Stephen Dankert
Ann Blazek
James Wood III
Katherine Hueppchen
Marvin & Myrtle Feldmann
Phyllis Roth
Zeta Omega Tau
University of Wi-Green Bay
Nick Serio
Stephen Dankert
Jason Mortensen
Lindy & Skip Poliner
Duncan Allison
Elise Harnisch
Teresa Skora

Team Hope Takes Over Wisconsin
Team Hope Wisconsin 
A Note From the President

So far, 2010 has been a year full of ups and downs.  I am sad to report in the previous several months the Wisconsin Chapter has lost two previous presidents, much too early in life.  Tom Griger joined his wife Kathy in December and Patrick Blessing passed away in July at the young age of 34.  In honor of these two selfless men, please consider the Griger Bowling Event and the Patrick Blessing Memorial Fund.

On the upside, the Wisconsin Chapter made great strides forward in hosting our largest state conference yet!  Special thanks goes out to chapter Social Worker Jean Morack for her tireless efforts in planning the event.

On a personal note, I experienced my proudest moment last February when, along with 5 of my closest friends, I summited Mt. Kilimanjaro in honor of HD Families everywhere.  I was also grateful to receive much media attention through my lumberjack endeavors and spread awareness about this terrible disease.  For the month of September I was honored to be on the cover of Brava Magazine with a fantastic personal story about how Huntington's Disease has touched my family.

I look forward to seeing everybody at events and get-togethers.  Let's continue to fight this fight together, in honor or Tom, Patrick, and all of our HD angels.


Shana Martin

The Roof of Africa-L to R: Shana Martin, Ryan Desch, Gretchen Greenberg, Katie Verstegen, Peter Verstegen, and Nate Greenberg.
Kilimanjaro for HDSA-WI

Bowling in Memory of Tom and Kathy Griger 
Tom GrigerKathy Griger 9-Pin Tap
October 16, 2010

3 shifts: 
11:00, 3:00 and 7:00

Motion Plus Lanes
3620 E Carpenter Ave
Cudahy, WI 
Phone: 414 481-0200

  Last December the Wisconsin Chapter lost a past president, and wonderful friend, Tom Griger.  Tom was the mastermind behind the Kathy Griger 9 Pin Tap.  He worked endless hours raising money to send for research to find a cure for this disease that affected his wife Kathy.  He didn't want any help and with the great friends, volunteers and the generosity of the bowling alley, Tom raised over $250,000.00.  He was honored at the Gala last year as HD Person Of The Year.   The bowling will continue this year in honor of Tom.
Please call Carey Catania if you want to reserve a lane for bowling.
If you have any questions or can donate something- we are always looking for prizes!  Please call Sandy Becker 262 780-1012
Previous HDSA-WI Chapter President:
Patrick Blessing Memorial Fund
Patrick It is with great regret that we write to inform you that the HDSA community lost a great contributor recently.  On 6/30/2010, former WI HDSA Chapter President, Hoop-a-thon chair, golf outing chair and Great Lakes Gala committee member, Pat Blessing, suffered a major heart attack. His heart crashed four times but doctors were able to conduct double bypass surgery at Froedtert Hospital in Milwaukee, WI.  The surgeons repaired two ventricles but the entire left side of his heart was severely damaged by the radiation therapy he received many years ago to treat his Leukemia. In the weeks following, two additional open-heart surgeries were conducted to stabilize his heart.
Patrick was transferred to St. Luke?s Cardiovascular Intensive Care Unit where it was decided the only way for Pat to survive would be to receive a full heart transplant. Patrick?s doctors recommend a transition to a portable heart device on in order to reduce the risks of additional clots that could create further problems. On Wednesday
afternoon (7/21), Patrick went in for surgery to place the portable heart device and prepare him for the six weeks of recovery estimated before a transplant would be possible. With great regret, Parick's heart and body were not strong enough to cope with the additional strain of the surgery.  Patrick was 34 years old and expecting his first child, with his wife Christy Blessing.  Christy was also a WI HDSA Board member and very active in many committees and fundraisers.
Due to Patrick's pre-existing medical conditions due to Leukemia, he did not qualify for life insurance.  All donations to the Patrick Blessing Memorial Fund will go toward the care and support of his future daughter due in November.  Please visit www.patrickblessingmemorial.com for more information and to make your memorial contribution.


Patrick and Christy

HD Caregiver Survey
As the primary caregiver for my father with HD, I have often wondered what resources I should be seeking to help aid in my caregiving for him. Do I really need a neurologist or is my family physician enough? Would it be beneficial to have a psychiatrist on my care team? What else would help HD caregivers the most to reduce their caregiving burden? As part of my PhD dissertation, I am conducting a research project to try to get to the answer of this complex question. If you are/have been a primary HD caregiver and would be willing to participate in this study, please contact Stephanie Bernander (a Wisconsin HD Chapter member) at 262-689-7742 or sbernander@gmail.com
Caregiver's Conference "Expanding Horizons"

HDSA - WI Chapter is co-hosting a caregiver's conference with the Alzheimer's Association at Country Springs Hotel in Pewaukee on Saturday, November 13th, 2010 from 8:30 am - 4:00 pm. 

Please come and join us, there will be speakers specifically for Huntington's Disease, Alzheimer's disease and combined topics for both diseases.   This year's keynote speaker is Linda Markut:  Take Care: Caregiving is Hard Work.  Break out sessions are:  Managing Difficult Behaviors & Enhancing Communications, Updates in Research, Driving and Dementia, Caregiver Resources, and Legal and Financial Issues.  In additional to speakers, there will be lunch and vendor exhibits. 
More information, including registration, will be mailed to you later this month.  If you have any questions, please call Jean Morack at 877-330-2699.  This conference is being made possible with the help of the Helen Bader Foundation.
Metalloproteinases May Be a New Therapeutic Target
 Dr. Lisa Ellerby, Dr. Robert Hughes, and colleagues at the Buck
Institute for Age Research have identified a group of proteinases as promising new targets for treatment. Proteinases are enzymes which cleave proteins.

The approach was based on the toxic fragment hypothesis that has received much support in previous research studies. The idea is that a key event in the development of Huntington's Disease is the cleavage of the HD protein into fragments which then enter the nucleus of the cell and cause damage.    
Since the huntingtin's protein is a caspase substrate, research into protein cleavage has focused on the cysteine protease family of caspases and calpains. Research by Dr. Michael Hayden and colleagues showed that when HD mice are crossed with mice genetically engineered to lack caspase six, they do not develop Huntington's Disease. Reseachers have been working on developing a safe and effective caspase six inhibitor but do not have one so far.
 The researchers decided to use an unbiased approach to identifying proteinases whose inhibition could be neuroprotective. Using high throughput screening technology, they knocked down each of the 514 known or suspected proteinase genes in HD cell cultures with siRNA and identified eleven whose suppression limited the accumulation of HD protein fragments. Nine of these are expressed in striatum cells and their suppression reduced cellular toxicity in a secondary screen.

 Of the nine remaining, three of these were matrix metalloproteinases (MMPs), zinc-containing enzymes whose function is to degrade extracellular matrix proteins. These were of particular interest because inhibitors of metalloproteinases are already in drug development for treating a variety of diseases. An imbalance between MMPs and tissue inhibitor metalloproteinases (TIMPs) has been implicated in cancer, kidney disease, rheumatoid arthritis, and heart disease. Inhibiting MMPs has also been shown to limit neuronal damage after stroke.

The researchers found that MMP enzymatic activity is elevated both in the R6/2 mice and the YAC128 mouse models of HD. One of these, MMP10, was found to directly cleave the HD protein. They found that the cleavage occured at amino acid 402. Knocking down MMP10 prevented cell death in striatal cells with the HD protein.

 The researchers also tested their approach in a drosophila model of HD. Drosophila has only two MMP genes and only the second (Dm2-MMP) is expressed in the brain. Knocking this gene down improved motor impaired. In addition, the HD protein also causes neurodegeneration of photoreceptors in the eye. Knocking down the Dm2-MMP gene partially ameliorated the problem.

 Further research is likely to proceed quickly. "We've found a target that has known drugs for cancer treatment that could possibly have significance for HD," said Dr. Ellerby. "MMPs are also involved in stroke, inflammation and many neurological processes; we expect a lot of scientific attention to now be focused on this important class of proteases," she said.

"The next step in this research will be to test some of the MMP inhibitor drugs as a potential treatment in HD mouse models," said Dr. Ellerby. "We'll also be crossing mice that no longer have particular MMPs with those who have HD to see what effect that has on offspring," she said.
John P. Miller, Jennifer Holcomb, Ismael Al-Ramahi, Maria de Haro, Juliette Gafni, Ningzhe Zhang, Eugene Kim, Mario Sanhueza, Cameron Torcassi, Seung Kwak, Juan Botas, Robert E. Hughes, and Lisa M. Ellerby. "Matrix Metalloproteinases Are Modifiers of Huntingtin Proteolysis and Toxicity in Huntington's Disease/" Neuron Volume 67, Issue 2, 199-212, 29 July 2010
- Marsha L. Miller, Ph.D., July 30, 2010
Triathlons and Races for Persons with HD
myTeam TriumphmyTEAM TRIUMPH is an athletic ride-along program created for children, teens, adults and veterans with disabilities who would normally not be able to experience endurance events such as road races or triathlons.  We are a non-profit organization dedicated to providing the ultimate experience in road racing and triathlon sport to individuals with disabilities.  myTEAM TRIUMPH brings the community together with the equipment necessary to allow them to experience the energy of packet pick-up and the thrill of crossing the finish line.  With myTEAM TRIUMPH, disabled participants get to do it all! They will "Captain" a team of "Angels" through an entire race guaranteeing them their moment of glory as they cross that finish line that so many of us take for granted.
Do you have Huntington's Disease and want to participate in a Triathlon?
myTEAM TRIUMPH is a non-profit charity.  For more information about how how to get involved please contact:
Christian Jensen
Executive Director
Dimebon Study Participants Needed 
Medivation Huntington Study Group (HSG), and the European Huntington's Disease Network (EHDN) are conducting a global collaborative multi-center, randomized, double-blind, placebo-controlled study of Dimebon in individuals with mild-to-moderate Huntington disease (HD). The purpose of the study is to assess the safety and efficacy of Dimebon 60 mg per day, when taken over a period of 6 months. Efficacy, or effectiveness, is determined by exploring whether or not there is an effect on cognitive (thinking) abilities and overall functioning in people with HD. The study will also evaluate other HD symptoms including behavioral and motor (movement) symptoms.
Dimebon is an experimental drug. Research has shown that Dimebon might be effective in preventing the death of brain cells in animals and improving thinking and memory in Alzheimer disease. Results of a HD study in the United States and United Kingdom showed that Dimebon 60mg per day was safe and well tolerated and suggested that Dimebon may improve cognition (thinking abilities) in individuals with HD.
Approximately 50 research centers across North America, Europe, and Australia will enroll approximately 350 individuals.  For Wisconsin, the local site is the Department of Neurology at the Medical College of Wisconsin - Froedtert Hospital.
For more information contact:
Clara Schindler
Clinical Research Coordinator
Department of Neurology
Medical College of Wisconsin
Froedtert Hospital
Tel: 414-805-3260
This study is being sponsored by Medivation, Inc in collaboration with Pfizer, Inc.
Midwest Log Rolling Championships for HD
Medivation Once again about 75 competitors from around the Midwest met in Madison for a fun day of log rolling, boom running, and raising money for Huntington's Disease.  As always, the athletes rasied money individually for prizes such as a #3 Log donated by Lumberjack Enterprises and a $500 chainsaw from Bailey's Woodsman's supply.  Competitors enjoyed a day of competition with prizes for all and food donated by Trader Joe's.  Thanks to more media coverage than ever, the competition brought in about $2500 in outside donations.  Thank you to all of the donors and volunteers who made this event possible once again, and congrats to your winners:
Boom RunningU7 Coed: Ana Rios
U10 Boys: Tanner Hallett
U10 Girls: Evie Lynch
U13 Boys: Shane Burns
U13 Girls: Kestra Peterson
U17 Boys: Alvin Christopherson
U17 Girls: Gretchen Greene
Adult Sport: Jeff Steinhauer
Celebrity: Dustin Maher
Elite Men: David Sievert
Elite Women: Emily Christopherson
Boom Run Men: Will Hoeschler
Boom Run Women: Alyse Schroeder

2010 HDSA Wisconsin Chapter Membership Letter
Caitlin Bradfield
Dear Friends and Family:
As we move through the year 2010, it is important to look back and see all the accomplishments that the Huntington's Disease Society of America, Wisconsin Chapter, had in 2009. Not only in raising public awareness of HD and raising money for research but in raising the hopes of those affected by Huntington's Disease.
We had a tremendously successful of fundraising through our Golf Outings, Bowling Events, and two NEW Team Hope run/walks. We also supported families through another family picnic and the new Caregiver's conference.
While raising public awareness of HD and raising money for research are essential in our fight against HD, giving support to those in our community is crucial to our survival. People will not talk about HD if there is no support system to talk through. People will not give to HDSA because no one has told them what HD is. It is through the support of HDSA - WI that we are able to talk about HD to anyone. It is also through that support system to ask for support in the fight for a cure.
In the five years since my Dad's diagnosis of HD, I no longer have the feeling of being alone or that feeling that no one else in this world could possibly understand what my family is going through.  Unfortunately, there are still many families out there who feel alone and it is up to us to make sure that they know they have a friend in HDSA-WI.
Whether is it through our support groups, family picnics, state conventions, hootenannies, cocktail galas, hoop-a-thons, walk a thons, or any other event we put on, it is crucial to have the support of our HDSA families. We all have one common goal in this fight. We need to raise awareness, raise donations and raise the hope for families that one day we will find a cure for this disease.
This is where we need to ask for your help. Please help us in our fight against Huntington's Disease. Your contribution, no matter the size, will go a long way in helping us find a cure. I am here for you should you need anything and hope you join the fight against HD.
Caitlin Bradfield

2010 HDSA-WI Membership Dues
Please help HDSA Wisconsin fund our newsletters, support groups, website, and social workers.  Dues are not required but contributions are appreciated.
Donations are also accepted online at: http://www.firstgiving.com/hdsa-wisc
Click Here to Donate
Checks can be mailed to:
Attn: Jean Morack
2041 N. 107th Street
Wauwatosa, WI 53226

Checks payable to: HDSA-Wisconsin