Thank you for visiting my personal fundraising page!
I updated the Team page with a personal note that I'll add below, too. Thank you for the wonderful donations so far! I'm excited to be able to do this with my family...and for my family!
In the Spring of 2016, I was going through some puzzling health issues and with guidance from my neurologist I decided to have my DNA tested for Huntington's Disease. When I was growing up, I'd heard my great grandmother mention a "family disease" that she suspected her daughter (my grandma) had but it was said in a hushed way....like it wasn't acceptable to talk about and not at all something a child should ask questions about. My great grandma had adopted my grandma and her twin brother following the death of their mother when they were infants. It was a familial adoption; my great grandma was the twins' first cousin. Because of the familial link, the twins were able to maintain contact with their siblings over the years and would reunite with them at family gatherings. Once in a while, the grandkids would be invited along and would get to see our grandmother's siblings and it was always very interesting for us to meet them and see the familiar twinkling eyes and mannerisms of this family that we really didn't feel very connected to but who looked so much like our grandma and her brother. Several of the siblings were in various stages of HD, some of them struggling with the obvious physical, motor symptoms of the disease and others with the not so obvious psychological and emotional symptoms. Again, I heard my great grandma refer to the "family disease." I've been told that 6 (possibly 7) of the nine siblings in my grandma's family had HD. I'll never know why my great grandma had suspected it in my grandma all those years...but sadly, she was correct in her assumption and my grandma is currently living with the late stage effects of the disease. Her spirit is still such a bright, shining example of hope to me. At almost 85 years old, she still has the sweetest demeanor and pushes through the coordination and motor effects on her body to do the things she considers "[her] exercise." Things like pulling a few weeds or beach grass from her sandy lawn or doing a load of laundry are more difficult for her and it takes more time for her to get from the bedroom to the washing machine with several starts and stops, as her limbs sometime seem to have intentions of their own but she patiently puts up with it, smiles or nods and sighs, then continues on her task. When I ask if I can help her, she smiles and says "It's my exercise."
My DNA test came back on April 5, 2016 and I was told that I will develop HD in my lifetime. I'm viewing this news as an excellent piece of information to have about my body! It's something I can share with my doctors as an important piece of my physiology. As we get closer to developing a cure, I can assist in drug trials, the results of which may benefit my family and others with HD. Through exercise, nutrition and medications showing promise of neuro-generative properties I can keep my mitochondria as healthy as possible for as long as possible. These strategies were not on the radar for past generations and I feel lucky to be alive as advances in research and medicine are finally being made in the fight against Huntington's Disease. Unfortunately, HD is a rare disease and HD research is not as well funded as the more common disease research out there...so fundraising for HDSA and spreading awareness is another thing I can do. When you have a degenerative genetic disease, there are a lot of things that feel outside of your control. This is my way of taking some of that control back. Please join our walk or donate! It really is a worthy cause...and they are SO close to finding a cure. You can be a part of that happening.
With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones.
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 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.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
Across the United States, HDSA currently supports:
•54 volunteer led Chapters & Affiliates
•43 Centers of Excellence
•170+ Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
Please register and help make a difference! If you cannot participate, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.
Thank you for your support!