BENEFITING: UC Irvine Foundation
ORGANIZER: UC Irvine Foundation
EVENT DATE: May 07, 2017
Dear Family and Friends,
For the past several years I have run the OC Half Marathon in an effort to raise money and awareness for Huntington’s Disease research and HD-CARE. My wife, Linda co-founded HD-CARE, a 503c charitable organization in support of the MIND Institute at the University of California, Irvine (UCI).
Huntington’s Disease (HD)
HD is a neurodegenerative, inherited, progressive disorder that affects movement, cognition, and behavior whereby the patient undergoes an onset of psychiatric symptoms, cognitive decline, and devastating motor deterioration. Each child of a parent with HD carries a 50% chance of inheriting the mutated gene. The hallmark symptom of Huntington’s disease is chorea, uncontrollable and often painful involuntary movement. The cognitive and behavioral symptoms of dementia due to Huntington’s include depression, memory problems, impaired judgment, and problems with short-term memory, organizing, coping, and concentrating. Delusions and hallucinations may occur. Symptoms that may also occur are irritability, anxiety, aggressive outbursts and social withdrawal. There is currently no treatment or cure for HD
My 26-year-old daughter, Stephany recently tested for HD. In January, Stephany, her fiancé Curtis, our oldest daughter Tammy, Linda, and I met with our psychologist for the result. Sadly, the result was that Stephany has inherited the mutated HD gene and is symptomatic. The following day we visited Dr. Neal Hermanowicz at the Movement Disorders Clinic of UCI who confirmed the results. Stephany has been amazingly strong throughout this process and continues to have a positive outlook. Your past contributions have made it possible for HD-CARE to be a part of some clinical trials designed to potentially slow the disease progression. Stephany has been invited to be part of this trial and we feel blessed by your contributions and prayers. We will not give up hope for a cure and with your support we will be that much closer.
The funds we raise go directly to HD-CARE. The monies donated will support Dr. Leslie Thompson’s research laboratory as will as Dr. Neal Hermonowicz’s movement disorder clinic at Gottschalk Medical Plaza at UCI.
Dr. Thompson's laboratory was the first to create a human model of HD through stem cells donated from the skin of affected individuals. We have supported Dr. Thompson for the past 17 years in trying to find a cure or treatment for this disease and believe in her abilities, as she is one of the top 5 researchers in the world of HD. The UCI Foundation has set up a specific account, whereby 100% of the value of the donation goes towards the mission, to find a therapy or cure for this devastating disease
If you would like to donate to this worthy cause, you can do so by donating to my fund-raising page through the link below and follow it to the picture of Stephany and me, any donation is greatly appreciated:
Also, please follow this link to view a video made by Stephany regarding her road of HD Testing.