Thank you for considering to donate to something that is near and dear to my heart.
Huntington's Disease took my sister Connie in 1999 at the age of 35.
Connie was one amazing woman. She was 11 years older than me and many times she was like a 2nd mother when I was growing up. She loved children and always said she wanted 6. When she was 23 and pregnant with my niece she moved back to our hometown and that is when my parents noticed there was something wrong. After about a year of testing Cleveland Clinic diagnosed her with HD. (Her father had died of HD but it was not known at the time he died.)
For the next 12 years I watched my sister who was then a new mom start losing her speech and balance. Many people in public would make fun of her because they thought she was drunk. As the years went by she started using a walker, got a feeding tube, needed help to use the restroom and with bathing, and then using a wheelchair. Connie was one determined lady to never lose her freedom and almost always had a smile on her face.
My sister went into the hospital just a few days before she died. We were given the news it would not be long and decided to bring my sister home so she could spend her last few days in her own bed surrounded by friends and family. On September 5th 1999 as my sister laid in her bed, my grandmother on one side of the bed and me on the other holding her hand; my sister took her to last breath.
Though Connie is gone her memory and my passion to find a CURE for HD gets stronger each day. Researchers have many new trials they believe will stop HD but for the trials to occur they need the funds to do so.
For those of you who do not know much about HDSA there is only a few paid employees and the rest are all volunteers so almost every dollar made goes directly to: research, and the patients.
If you would like more information about HDSA please visit their website at: www.hdsa.org
We also are always looking for volunteers, sponsors, etc.
Or feel free to contact me:
Marilyn M. McCloskey-President for Central Florida Affiliate HDSA