Huntington's Disease Society of America
Northeast Ohio Chapter

Cleveland Area Support Group Meetings

Location: Cuyahoga County Public Library Independence Branch located at 6361 Selig Drive, Independence, OH 44131. Location information.
Meetings are Mondays from 7:00 to 8:45 p.m.

2008 dates:
August 18, September 15, October 20, November 17, December 15

For more information, please contact Chapter President Wes Johnston by phone at 330-922-3443 or by e-mail to pards3@yahoo.com.

Akron Area Support Group Meetings

Location: Ellet Community Center, 2449 Wedgewood Drive, Akron, OH 44312 [MAP].
Mondays at 6:45 p.m.

2008 dates:
September 8, October 6, November 3, December 8

If you have any questions, please call Wes Johnston at 330-922-3443 or by e-mail to pards3@yahoo.com.


Kitchens & Cuisines of the World

Thursday, September 25, 2008
5:30 – 10:00 p.m.
Trevarrow Living Kitchens Showroom
Parma, OH

An exciting evening of international cuisine and libations all to benefit a wonderful cause! DETAILS...

Printable flyer | Partnership opportunities


Alan M. Tartakoff, PhD, attends & presents
at the 3rd Annual Huntington's Disease Therapeutics Conference

Alan M. Tartakoff, PhD, attended and made a presentation at the third annual "Huntington's Disease Therapeutics Conference," February 4-7, 2008 in Palm Springs, CA. This international meeting was attended by 150 researchers, representatives of HD-oriented organizations, and by a small number of members of HD families. The meeting is organized by and provides a glimpse of the inner workings of a most unusual organization, the "Cure Huntington's Disease Initiative (CHDI)."

CHDI now supplants what formerly was known as the High Q Foundation and has incorporated senior individuals who were previously linked to other HD-oriented organizations. Their mission is intensely research-oriented and their impressive staff including 23 PhD scientists considers itself to be actively guiding the future of HD research. Their principal emphasis is on drug development – even though many would question whether this emphasis is premature – but they also pursue more fundamental aspects of HD pathogenesis and clinically-relevant issues.

The range of recipients of CHDI support is unusual, as it includes individual researchers, consortia, and pharmaceutical companies. Operating as a think-tank as well as a funding organization, CHDI roundtables lead the staff to debate, formulate and then pursue a broad range of needs of the present and future research community.

Thus, having decided that stem cell-related efforts need greater coordination, and that specific research tools need refinement, they take the initiative in bringing together and supporting virtual teams talent from Europe, Canada and the USA. Adding to their scope and strength is their geography, which includes offices in New York City, Princeton and Los Angeles.

The subject matter of the talks and posters was unusually diverse and included both established and new investigators. Among the highlights were talks describing the development of new cell culture resources for HD research, as well as genome-wide, so-called "systems biology" approaches. For this participant, genetic approaches needed increased visibility; however, the vigor and resources of CHDI give the impression that they will leave no stone unturned. This intensification of pace is inspiring for all.


Clinical Trial Reports

New 12 month data were reported on the continuation study of the Miraxion EPA trial. Though the earlier 6-month placebo controlled trial showed no benefit, Amarin reported possible trend towards benefit in their 12 month follow up.

Trials for atomoxatine and citalopram will soon be completed, with results likely to be reported by midyear.

The minocycline trial has completed recruitment, but reported results are not expected for at least 1 year.

The phase II trial for Dimebon has begun and is actively recruiting.

Phase III studies for both coenzyme Q-10 and creatine are slated to start later this year, but neither has begun recruiting. These are long trials with results in 4 to 5 years.

Trials for ACR-16 are still in the talking phase in the U.S. However, EHDN has reported that Phase III clinical trials are slated to begin in Europe.


Recycle cell phones and ink cartridges.

Recycle your old cell phones and used ink cartridges. Give them to a Board Member or send them to Jeanie Chresos. Ms. Chresos will get them to the proper place and the Chapter will receive the recycling money. Help preserve the earth and help find a cure for HD, all at the same time. What could be better!

Questions or the turn in your items:
Contact Jeanie Chresos
5279 W. 52nd Street
Parma, OH 44134-1034
216-351-3932
Cath3517@aol.com


Neurogenetics Clinic

We have met with Dr. Robert Daroff, Interim Head of the Neurology Department at UH about the possibility of re-establishing the HD Clinic at University Hospitals. It is our hope that we will once again have a social worker to facilitate support group meetings, and to provide assistance to our HD patients, families, and caregivers.


HD Bracelets

Blue HD bracelets are available for $2.00 at the Support Group meetings.

SPECIAL NOTICE

Recently there have been reports of stem cell treatments for people with Huntington's Disease in the People's Republic of China. HDSA's medical/scientific advisors have not received any data to confirm the claims made in these reports. Of great concern are websites making fundraising appeals for the stated purpose of sending people to China for these treatments. These websites are using, without authority, the Huntington's Disease Society of America's name and logo, and the logos of HDSA fundraising programs.

HDSA has had no prior knowledge of and does not endorse or support these fundraising efforts. The Society is actively pursuing the removal of its name and logos from these sites and will do so with any website or other unauthorized usage found. Please contact Fred Taubman (ftaubman@hdsa.org, (212) 242-1968 ext: 229) if you are aware of any such misuse of HDSA's name and/or registered marks.

HDSA goes to great efforts to support and report all legitimate research and therapeutic programs of potential benefit to the HD Community. HDSA takes its mission seriously and believes that all information provided is accurate and reliable.

Download
Winter '08 News
in pdf format

Brain Disease Blocker
ScienCentral, a producer of science stories for radio, television and the internet, featured a segment on Huntington's Disease in 2004. The segment can be viewed on the ScienCentral web site, www.sciencentral.com.

The Huntington's Disease Society of America (HDSA) wishes to thank the HD family members who volunteered to tell their story to ScienCentral so that the millions of viewers worldwide who see this story can be educated about Huntington's Disease and the hope that research offers for effective treatments and eventually a cure.

Call 211
Are you aware that most counties provide an information line to
residents and they need only call 211. This Info Line maintains a database of service providers which serve the counties. Trained information specialists are available 24 hours a day, 7 days a week - with specialized
telecommunications equipment to serve individuals with hearing impairments. Because of support of local funding agencies - such as United Way and the Area Agency on Aging, this is a free service to area residents. Callers can receive free information about any number of services, including:
* Drug Abuse & Alcoholism
* Counseling Services
* Senior Citizen Services
* Government Services
* Medical & Legal Services
* Employment Information
* Housing
* Transportation
* Emergency Food Assistance
* Emergency Utility Assistance
* Support Groups
* Special Services for Seniors
YOU CAN HELP! Both funds and volunteers are needed to help the Huntington's Disease Society of America grow. To make a donation, to offer your time or for more information, please contact The HDSA NE Ohio Chapter at 330-922-3443 or your local chapter.
TOLL-FREE NATIONAL HDSA INFORMATION LINE 1-800-345-HDSA — on the Web at www.hdsa.org.
Huntington's Disease Society of America - Northeast Ohio Chapter
Wesley G. Johnston, President
1567 18th Street
Cuyahoga Falls, OH 44223
330-922-3443
e-mail pards3@yahoo.com
Presented by Lakewood Public Library