Huntington's Disease(HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families: emotionally, socially and economically.

Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.

Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.

HD typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.

Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals. By continuing to increase our investment in both clinical and basic HD research each year, breakthroughs in treatment - and a cure - will be forthcoming. (information provided by HDSA)

Genetic Testing Information & Answers to Frequently Asked Questions

Physical Therapy Information for Patients with Huntington's Disease

The HDSA Center of Excellence is involved in clinical trials for the prevention, diagnosis and treatment of Huntington’s disease. The studies include local OSU trials, cooperative group trials and studies sponsored by pharmaceutical companies.

Clinical trials are an important reason the HDSA Center of Excellence is able to offer our patients the latest treatments for Huntington’s disease. If you would like information on current and upcoming research trials for Huntington’s disease being conducted at the center, please contact

Melissa Carroll, melissa.carroll@osumc.edu

Monthly Support Group Meetings are held at 7:00 p.m. on the second Thursday of each month at:

The Atonement Lutheran Church
1621 Fransisco Road
Columbus, OH 43220
click here for driving directions

If you have any questions regarding the Central Ohio Chapter you may call Barb Heiman at (614) 292-9960 or you may write to them at:

HDSA Central Ohio Chapter
490 City Park Ave., Suite C
Columbus, OH 43215

Huntington's Disease Society of America's annual Celebration of Hope Leadership Awards took place on Thursday, September 23 at 6:00pm at the The Athletic Club of Columbus. The awards dinner honored the following:

Bea Wolper, Esq.
Chester, Wilcox & Saxbe, LLP

John S. Christie
President and Chief Financial Officer, Worthington Industries, Inc

The Henry "Chip" Hixson Family

The Master of Ceremonies was Andrea Cambern, WBNS 10TV

Tina Farley, Event Chair
email: celebrationofhope2004@yahoo.com
Telephone: (614) 460-8800

Information regarding next year's event will be posted as it beomes available. Thanks to everyone who attended or supported this event.

"Care ~ Commitment ~ Cure"

New hope for the at-risk who want to conceive

CA clinic tests for HD in vitro
Couples worried about conceiving children with the genetic defect that causes Huntington's disease can now have access to relatively affordable procedures to avoid the problem. Rather than undergo the emotional stress of testing their baby in the uterus, they can now opt for preimplantation genetic diagnosis (PGD).

The Institute for Reproductive Medicine and GeneticTesting in Los Angeles has offered PGD since 2001. Earlier this year it successfully helped one couple to avoid Huntington's in their newborn, according to a spokesperson for the clinic. The clinic staff believes that it was perhaps the first such birth in the southwestern U.S.

The patient underwent in vitro fertilization (IVF). Her embryos were then biopsied and PGD was performed to test for HD. Healthy embryos were transferred to the uterus, and the women conceived. An amniocentesis was also performed to confirm that the pregnancy was healthy. The pregnancy and delivery went forth without complication.

Estimates for the total cost of the procedures (IVF, PGD, medication, clinic visits, ultrasounds, and tests) range between $7,400 and $12,000. Costs depend on each patient's response to medication and the number of visits and tests. Several years ago these procedures were unavailable in southern California, and the costs of carrying them out were tens of thousands of dollars more.

For more information, contact the institute at 310-280-6765. Information is also available at www.tylermedicalclinic.com and www.preimplantationgenetictesting.com.
Conquest.Vol. 3, Issue 2, Pg 12.