Thank you for visiting our Team fundraising page! 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 following is an overview on why I started "Jonesing for a Cure" team:

Because I Can

I am writing my story, because I can. The words "because I can" may seem simple and easy to say, but they are not. Growing up, I always knew there was something "different" about my mother. The first sign was when I was around four years old, sitting in the passenger front seat of our 1970's, wood side panel station wagon, and my mother got confused between the red and green traffic lights. Bam! Another car ran into the side of our car, the side I was sitting in. That moment made a life long impact on me. It was from that moment forward that I understood that Huntington's disease is a quintessential family disease.

From the national Huntington's Disease Society of America website, www.hdsa.org:

"Huntington’s disease (HD) 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 approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease."

Even though 22 years ago, I tested negative for carrying the elongated gene, it doesn't mean that I am totally free from Huntington's disease. The disease affects everyone in the family, because of how the symptoms evolve. HD is often described as having A.L.S., Parkinson's, Alzheimer's, Schizophrenia, Dementia, Bipolar disorder, O.C.D., and Clinical Depression - simultaneously. As a teenager, living alone with my mother, I had to talk her out of committing suicide, because of her deep depression caused by HD. At other times she would have violent out bursts, and chase me down the bedroom hallway, screaming at the top of her lungs. In public, I had to tell people that my mother wasn't drunk, but rather her shuffled walk and slurred speech where because she was suffering from Huntington's disease. With my friends, they all knew that my home life was different, in an extreme way, than theirs. I couldn't have sleep-over, parties, or after school hang outs at my house, because I didn't want to expose my friends to what I had to live through each and every day. I knew the person I was living with, wasn't my real mother, but rather the version this disease was making her into.

Eventually, along with my other three siblings, we had to admit my mother to a mental health hospital to help her understand that she needed more care than what any of us could give her. Eventually, she did voluntary go into a long-term care facility. My mother spent 15 years living out the rest of her life in various nursing homes. Huntington's disease is a slowly progressive terminal disease, that requires long term care for many years.

As I mentioned before, I am gene negative, but my oldest brother is not. He inherited the HD gene from my mother. At the age of 51, he is now in a long term care facility. His ability to talk is limited to mostly yes or no answers to questions. He is very limited on the type of food he can eat, since one of the disabilities is the loss in the ability to swallow, leading to choking even on one's own saliva. So now, he gets his meals in liquid form. Everyday, it is heartbreaking to see the person I grew up admiring and looking up to the most in my life, ending up having to be taken care of with the simplest tasks.

Because my brother can't talk about HD, I do, because I can. It's safe for me and the rest of my siblings to talk about Huntington's disease, because the rest of us are gene negative. For those who are in the HD community that haven't been tested yet, but are still at "risk", it's not as safe to freely talk about HD in their family, for fear of loosing their jobs, in ability to get Long Term Care Insurance, or even discrimination within their own family. For many years, Huntington's disease has been a silent, under represented, and viewed as a shaming disease to have running in one's own family. Through Huntington's Disease Society of America (HDSA) and the local HDSA-Rocky Mountain Chapter, we are working hard to change that stigma and pattern. Families and people who have HD, now have the support and education they have long needed to enable them to live with this disease in dignity, and no longer alone. There are no survivors of HD, yet, but now we are closer more than ever before for finding a cure! There are multiple drug trails going on to find that cure and create a generation of HD survivors.

That is why I personally volunteer my time and money to support HDSA-Rocky Mountain Chapter. Because I can and I strongly encourage you to help support as many of your local Huntington's disease communities as possible. Help to support the mission of providing help for today, and hope for tomorrow.

~ Aya

HDSA-Rocky Mountain Chapter:
Board Advocacy Chair volunteer
Social Media volunteer
Boulder "Blue Moon" Team Hope Walk Lead Coordinator volunteer
Boulder Peer Support Group Leader volunteer
http://hdsa.donordrive.com/team/jones
www.hdsa.org/co
www.hdsa.org/thwboulder

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
•21 Centers of Excellence
•40 Social Workers
•120 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 walk with me by joining my team and help make a difference! If you cannot walk with us, please consider making a donation to our team fundraising page by clicking the ‘Donate’ button at the top of this page. 

Thank you for your support!

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