Roberto Cannistraci

Team Captain Hunting for a cure Philadelphia, PA Team Hope Walk

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MY STORY,

Those that know me as of late know I have been trying to be a more charitable person. The reason behind me wanting to help is a little easier to tell in person. But to make it easier to quickly explain is in my family there is a hereditary disease called Huntingdons clorea or Huntingdons disease or just HD. Everyone in my family has had it. Everyone before me. My brother who passed at age 34 in 2010, my mom who passed at age 44 in 1998, her siblings and all the family before her... EVERYONE!! 

Well about 10 years ago I was looking to change careers where I work. And the job change would depend on not just my health but my mental health as well. And if I had HD it would limit the amount of time I would be able to do that. Or really any job. I wanted the job change bad because I was starting to miss out on things with my kids as they were getting older and I was on night shift and the job change would be day shift. 

Well anyway I started the process of getting tested. I had to go threw several months of therapy before they would allow me to get the blood work done.  And more importantly the bigger reason behind getting tested was to know if my kids would have it. It’s a 50/50 chance. And my odds weren’t so good because of my blood line has been 100%. I was raised and grew up thinking that I will one day be incapable of caring for myself or anyone else. Well to be less dramatic and to shorten my story my results came back negative. I don’t have it.  I don’t carry the gene. My kids can’t have it. The bloodline of HD stopped just before me. It was so ingrained in me that I would have it that when the results were read it still sounded like he said I had it. My wife just looked at me as said 

“Did you hear what he said... he said “it’s negative”. 

I said yes I heard him “I knew I had it”. 

She said “NO.. YOU DON’T it’s negative!

I don’t know why but I had a second chance.  And at that moment my outlook on life changed. BUT!!! I didn’t utilize my new found outlook on life. I turned away from my family’s history and never looked back. No interest to help others with the disease. I wanted nothing to do with what has haunted my early years, my childhood my family for as long as I can remember. 

Well anyway because I am making this longer then I wanted. I found 215 Mopar. A car club. And I met a group of individuals with a urge to do for others and the community. To be different then any other car club or charitable local group. And I saw the things they were doing and I wanted to be part of it. And it changed me. I started to think I have wasted the past 10 years of my life with my back to my past family. 

Then I saw an opportunity to help. There was family within 215 Mopar. The Booker Family. They were doing a charitable walk for their little girl. And basically they were doing it with their direct family and a couple of club members. I had no idea what I was doing. I’ve ran and organized other functions but not a charity walk within a car club. But I asked the club president if I can organize a event within the club to help get attendance for this walk. And he said yes. 

I saw the opportunity to make a difference even if it was small in others eyes. But in my eyes and this family it was huge. It felt good to see all those people coming together to help one another. That walk changed me. This club changed me. And from there I helped organize another walk a month later for the Raymond Family. 

And now this year I’m helping to run and organize multiple charitable walks with in my club this year including this one. And the rewards have been great. And that’s my story and hopefully you can see why I want no praise for helping others. I have to much catching up to do for the past 10 years

Read below if you want to learn about HD. And the Huntington’s Disease Society of America.

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
•70+Social Workers
•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!

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