Emily's Wishis a cure for Huntington's / Juvenile Huntington's Disease and we are asking for your help.
Emily grew up a happy, active, friendly child with a giggle and smile that warmed your heart. She enjoyed life and looked forward to the future. She found good in people when others could not and was always there to help. Emily attended Fountain Valley High School and although she was struggling with the cognitive, emotional and reduced motor skills of HD she graduated in 2006. Although her dreams for the future ended when she discovered that she had Juvenile Huntington's Disease, for which there is no known treatment or cure, her concern was that people would worry or feel sorry for her and that she didn't want. She fought this terrible disease and wished for a cure, if not for herself then for others who still had time. She did everything she could to help. She opened her heart and shared her story with all who would listen. She took part in studies, trials, workshops, seminars, conferences and fundraising events. When asked if she was on drugs or retarded, her response was “No, I have Huntington’s disease and my brain cells are dying”. She visited Jan Nolta and her team at UC Davis to support their research and with Leslie Thompson's class at UCI to help them understand HD and ask for their help in the search for a cure. She participated in HDSA-LA Team Hope Walk and was the first ambassador with JHD at the 2009 HDSA-OC Team Hope Walk. Two days later she was hospitalized and a week later she lost her battle at the age of 21. She is at peace, watching over us and continues to give back more than she ever received. For those who still have time, we will not stop until her wish comes true and a cure is found. Please help
What Is JHD?
Juvenile Huntington’s Disease is a hereditarily dominant, rapidly progressive, neuro-degenerative disorder that results in the loss of both mental faculties and physical control. Symptoms are similar to the worst of those associated with Alzheimer's, Parkinson’s and ALS with no known cure or effective treatment. There are no survivors. However, unlike other diseases HD has a single known genetic cause and a bio-marker making it an excellent target for research the results of which will benefit other neuro-degenerative diseases.
What Is HDSA
The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to awareness/advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family. With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones.
Please register and join us at the walk. If you cannot participate, please consider making a donation to our personal fundraising page by clicking the ‘Donate’ button at the top of this page.