As some of you may know, I was diagnosed with Late Onset Tay-Sachs disease last year. After attending the National Tay-Sachs & Allied Diseases (NTSAD) Annual Family Conference for the first time and meeting some amazing people, I want to start raising money for research for a cure and spreading awareness. I need your help, and I appreciate your support. Here is my story.
After college in November 2021, I noticed that I was having trouble climbing stairs. Since then, my leg muscles have continued to get weaker and weaker. Now, I can’t even wear high heels, but that’s not too much of a loss. Everyday tasks have grown more difficult whether dressing myself or getting up from a chair. Sometimes, I fall when I’m walking. My legs just give out.
I expected to be spending my 20’s a little bit differently, but I still live my life and adapt as much as I can. I spent some time in pursuit of an answer and finding out what was the matter with me. I saw a neurologist and underwent tests at the University of California San Diego (UCSD).
I was diagnosed with a rare disorder called Late Onset Tay-Sachs disease. My Mom and Dad are carriers and never suspected they each had the recessive geneOften referred to as the "unit of heredity." A gene is composed of a sequence of DNA required to produce a functional protein. More for this neurodegenerative disease. According to NTSAD, I am among fewer than 100 cases reported worldwide. Infants with Tay-Sachs usually die by age 4. Children with the juvenile onset pass away before or shortly after entering their teens. So, I guess I’m lucky that at my age, I am still alive. But the disease’s progression will continue. And I must ponder a future where swallowing may prove difficult; my mobility will be limited, and I will need a wheelchair. You can learn more about Tay-Sachs disease here.
Currently, there is no cure or treatment. But we can change that. We need funds for research to find effective treatments for this ultra-rare disease, and there’s no celebrity who has it to bring attention to it. So, I need your help raising money for research, so we can one day have effective treatments for Tay-Sachs disease. Sure, this fundraising effort is partially for me, but it is also for infants and kids who aren’t as lucky as I am. And it’s for the families who have no choice but to embark on this difficult, sad, and uncertain journey.
Every dollar you donate to Allie’s Day of Hope will go directly to research. So please help and give what you can. I know I have your love and support and appreciate it so much. Whatever your contribution will go to making a difference in my life and many families like mine with children and adults who have Tay-Sachs. You can offer hope.
PS- You can also show affected families you care by joining me in Moving a Mile for Hope on September 9th. Post a picture on social media of you walking on the treadmill or outside, use the hashtag #NTSADDOH23 and #NTSADMoveforHope, and tag @NTSAD. You can also find more on my story at Allie_vs_TaySachs on Instagram.
2001 Beacon Street
Boston, MA 02135.
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National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
The content of this website is intended for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis, or treatment.
The National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
Get the latest news from NTSAD about our Community, the research that provides hope, and what is happening in the world of rare disease.
2001 Beacon Street, Suite 204
Boston, MA 02135
(617) 277-4463 email@example.com
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street, Suite 204, Boston, MA 02135
(617) 277-4463 | firstname.lastname@example.org