Huntington's Disease eBulletin – Texas EditionFebruary 2007 |
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Hello Texas!
Be sure to visit the Texas Affiliate Web site for information about HDSA support groups that are local to your area.
- Texas HDSA Affiliate Website: http://www.hdsatexas.org
(Texas local news and support)
Note: It's 2007 and I would like to update the HDSATexas.org Web site with the 2007 calendar for all of the support groups. Please review the support site and let me know if changes are needed.
- Support Group Meetings Coming Up Soon:
Dallas/Denton/Grapevine/Ft. Worth Support Group on Tuesday February
20th; Austin Area HDSA Support Group on Thursday, March 1st;
Houston Area HDSA Support Group on Sunday March 18
- Sept 8, 2007 6th annual 5k Walk/Run for Hope,
Oyster Creek
Trails and Park, Sugar Land, TX., Tee shirts, food, music, clowns,
raffle, kids' world, prizes, and fun. Top male and female runners
will
each win airfare, two day stay in San Diego and free registration
to
run in the San Diego marathon. Also includes a one-mile fun run
for
kids. All children participating will receive a medal for helping
fight HD. Top fundraising prize worth at least $500 to be
announced
later. Please watch the TX Affiliate website for more info and to
register or to set up a fundraising website. Details to
follow
shortly.
- April 18th, 3rd annual Houston Celebration of Hope
honoring, among others, the Peter Pratt Family for
Philanthropy and TX
artist and sculptor, David Adicke for contributions to the
arts.
Location to be determined. Tickets $150 and up
includes
music, dinner, silent and live auctions, and more. All funds
support
the Center of Excellence at Baylor and national research like that at
UTSWMC in Dallas and at Baylor-Houston. Watch website for details
or
to participate, contact Janice Watsky at jwatsky@hotmail.com
- May 2007 (Date to be determined) Dallas area 5k Walk for
Hope
in Grapevine Texas. Food ,raffle, 50-50, tee shirts, and
fellowship. Watch website for updates.
- BMW tickets, Driving For A Cure....on sale now until
drawing on June 16th. Tickets are $100 each and limited to 2500
to be
sold. Tickets make you eligible to win a 2007 BMW
328iSedan or $25,000
in cash. Other prizes to be drawn are $5,000 cash, $2500 cash,
$750
cash or $500 cash. If you purchase or sell two $100 tickets, you
will
receive a third one for free! To purchase tickets and have the saless
credited to TX, they need to buy them through me at jwatsky@hotmail.com
or 866-712-0523.
- March 24th, the Non-Traditional Student Organization of Sam
Houston University at Huntsville is sponsoring a semi-formal dance
, "A Walk in the Park", at the Ballroom of the Loman Student Center to
benefit HDSA research. Tickets are $10 each or $15 for two and
include
deli dinner, tea, punch, music, and fun from 5-9 pm. The public
is
invited to attend but tickets must be purchased in advance through NTSO
President, Angi Bremkamp at 832-217-4929 or psychologicalbaby@yahoo.com.
- June 15th - 17th, HDSA National Convention - 40th Anniversary
at Oklahoma City. Sign up before March 31st for the early bird
registration and join us for the premier HD event of each year.
Attend
the workshops to learn more about managing HD issues and listen to
researchers and clinicians personally report the latest treatment
studies and research.
- If anybody would like to participate in any event or to help with planning and presentation of them, call Janice Watsky at 866-712-0523
-
Other sites of interest
- Huntington's Disease Society of America: http://www.hdsa.org (National research fund raising)
- HDlighthouse: http://www.hdlighthouse.org (Latest news in HD research)
- Huntington's Disease Advocacy Center: http://www.hdac.org (HD family stories and cyber-support)
What's New in the News?
Further Evidence that Trehalose may be Beneficial for HD.
Researchers discover important new clues about how trehalose protects cells from stress. posted 02-18-2007
http://hddrugworks.org/articles/32.html
HDDW Trials at 2½ Years and the Stockdale Paradox
Every six months HDDW reviews data gathered from HDDW trial participants. While doing this review Dr. Goodman also read a book about Admiral James Stockdale who had been a Vietnam prisoner of war and drew a connection between the experiences of HDDW participants and the wisdom that has come to be called the Stockdale Paradox. This is an education in proactive realism. posted 02-17-2007
http://hddrugworks.org/articles/34.html
Loneliness and Dementia
Having friends decreases the risk of developing Alzheimer posted 02-07-2007
http://www.hdlighthouse.org/treatment-care/care/hdltriad/spirituality/updates/1369friends.php
NCAMs in the HD mice
Problems with neural cell adhesion molecules may explain cognitive and olfactory dysfunction in HD. CHDI is funding preclinical testing with a NCAM mimetic. posted 02-06-2007
http://www.hdlighthouse.org/research/brain/updates/1352ncam.php
Miraxion Study Completed, Results Soon
Amarin Corp. and the HSG have completed a Phase III clinical trial of Miraxion which investigated whether the drug improves motor symptoms in HD. posted 02-05-2007
http://www.hdlighthouse.org/research/trials/updates/1367ethyl-epa.php
HSG Press Conference - January 2007
Members of the Huntington Study Group held their quarterly press conference with Huntington’s Disease family reporters. HSG history, the process of choosing compounds for clinical trials, the FDA, the status of the TUDCA study, and communicating trial results were discussed. posted 02-04-2007
http://www.hdlighthouse.org/research/general/updates/1366hsg2007.php
JHD Retreat in Arizona June 1-3
An exciting new retreat is planned for June 1-3 in Arizona for families dealing with Juvenile Huntington's Disease. This is sponsored by the Arizona HDSA Affiliate. posted 01-30-2007
http://www.hdac.org/features/article.php?p_articleNumber=363
Yes, There is Such a Thing as a Free Lunch!
Two years ago, Maggie introduced a free lunch program at her manufacturing company. The improvement in post lunch productivity and employee health more than offset the cost of the program. But this article is about kale (yes - that leafy green vegetable) and a healthy recipe for "Boerekool". posted 01-29-2007
http://www.hdac.org/features/article.php?p_articleNumber=362
Advocate for the Genetic Information Nondiscrimination Act of 2007
The Genetic Information Nondiscrimination Act of 2007 is winding its way through the legislative process. This is a critical piece of legislation for HD families that must be passed. Make sure you weight in on this with your legislative representatives. posted 01-23-2007
http://www.hdac.org/features/article.php?p_articleNumber=361
Families discuss preclinical HD
An important study was recently conducted where family members talk about coping with changes in gene positive family members before diagnosis. This provides insight into early recognition of the disease and how family members prepare for the diagnosis. posted 01-23-2007
http://www.hdlighthouse.org/abouthd/updates/1358presymptomatic.php
Tony, Me, and Healthy Cooking
How does a caregiver prepare food that is nutritious, healthy and high calorie for the person she loves, in order to help him maintain his weight and his general good health and still be able to fit through the garage door? posted 01-21-2007
http://www.hdac.org/features/article.php?p_articleNumber=360
Creatine Trials
Avicena is planning a phase II toxicology trial for its creatine product followed soon by a phase III trial. posted 01-16-2007
http://www.hdlighthouse.org/research/trials/updates/1355creatine.php
Striosome Damage Indicted in HD Mood Disorders
Pronounced mood dysfunction in HD is associated with damage to the GAMA alpha receptors (the connection between neurons and target tissue)in the striosomes compartment of the brain posted 01-15-2007
http://www.hdlighthouse.org/abouthd/updates/1353striosomes.php
Psychiatric Disorders in Pre-Clinical Huntington's disease
Depression and irritability precede clinical onset. posted 12-24-2006
http://www.hdlighthouse.org/abouthd/updates/1348psychiatric.php
Clinical Trial of Stem Cell Therapy for Batten Disease
The first clinical trial of stem cell therapy for a neurodegenerative disorder has begun. posted 12-22-2006
http://www.hdlighthouse.org/research/trials/updates/1346batten.php
— news list provided by hdac.org —
| Steve Ireland Web Site Administrator Email: webmaster@hdsatexas.org Georgetown, Texas |
Janice Watsky |
Cheryl Lenheiser, LCSW |