Running For a Cure
Tax deductible
For those of you who don't know me, my name is Patrick Cutter and I am 28 years old from Rochester, NY. I am a lover of life and running, which many of you won't find as a surprise! I have choosen to use running as a platform to help raise awairness and funds to help find a cure for the terminal illness that both of my cousins suffer from. I will be running the 2018 Boston Marathon in April with hopes of raising around $3,000 for the Sanfilippo research foundation, which would bring the total amount over the past 5 Bostons to $10,000! This will be my 17th marathon overall and my 5th time running the Boston marathon with a purpose and meaning! I will not be doing this alone as I will have family and friends helping me along the way! But we really need YOUR help to make this happen. No donation is too small and even just sharing this page would be a great thing!
My cousins Jon and Jason were born with MPS III which is also known as Sanfilippo Syndrome. The saddest part of this awful disease is that there is currently no treatment or cure. The research still has many tests and regulatory hurdles to be overcome---all of which will require additional funding.
Sanfilippo Syndrome takes children far too soon from their families. Families dealing with this disease cherish every day with their kids because they don't know how long they have. I had the great honor and pleasure of meeting Stuart and Jennifer Siedman after my first Boston, who are the directors of the Sanfilippo Research Foundation (Also known as Ben's Dream) while in Boston this past year for the marathon. Their son Benjamin had Sanfilippo Syndrome just as my cousins do. Sadly, Ben was taken home to be with the Lord this year only a little more than a month shy of his 18th birthday. Ben was lucky to have two Godly parents so active in raising funds and awareness for Sanfilippo Syndrome.
An update on Jon and Jason: They are now 30 and 27 respectively. They moved into a 24/7 assisted living group home last year with 4 other young men with disabilities and are enjoying their new life! For those who aren't familiar with Jon and Jason, they are a true blessing and inspiration! Both boys are very loving, FULL of energy and BIG fans Barney and Disney movies. They love hugs and laughing and will try to hold your hand every chance they get. They are raised by two very loving parents, along with the help of aides, who love these children more than anything. I respect and admire my Aunt Deb and Uncle Rich more than they will ever know for all that they do and stand for. The love they have for Jon and Jason is powerful. Spend two minutes watching them interact!
Now reaching year five of running for a cure, we are sadly still without one. Without a cure, we move a day closer to the sad reality of Sanfillipo syndrome claiming another childs life, far too soon. But with your help we can also be one day closer to curing this terrible illness and allowing these kids to live a normal life and realize thier dreams!
Never give up.
Thank you again for your generosity, support, and for passing this on to others!
Patrick
My cousins Jon and Jason were born with MPS III which is also known as Sanfilippo Syndrome. The saddest part of this awful disease is that there is currently no treatment or cure. The research still has many tests and regulatory hurdles to be overcome---all of which will require additional funding.
Sanfilippo Syndrome takes children far too soon from their families. Families dealing with this disease cherish every day with their kids because they don't know how long they have. I had the great honor and pleasure of meeting Stuart and Jennifer Siedman after my first Boston, who are the directors of the Sanfilippo Research Foundation (Also known as Ben's Dream) while in Boston this past year for the marathon. Their son Benjamin had Sanfilippo Syndrome just as my cousins do. Sadly, Ben was taken home to be with the Lord this year only a little more than a month shy of his 18th birthday. Ben was lucky to have two Godly parents so active in raising funds and awareness for Sanfilippo Syndrome.
An update on Jon and Jason: They are now 30 and 27 respectively. They moved into a 24/7 assisted living group home last year with 4 other young men with disabilities and are enjoying their new life! For those who aren't familiar with Jon and Jason, they are a true blessing and inspiration! Both boys are very loving, FULL of energy and BIG fans Barney and Disney movies. They love hugs and laughing and will try to hold your hand every chance they get. They are raised by two very loving parents, along with the help of aides, who love these children more than anything. I respect and admire my Aunt Deb and Uncle Rich more than they will ever know for all that they do and stand for. The love they have for Jon and Jason is powerful. Spend two minutes watching them interact!
Now reaching year five of running for a cure, we are sadly still without one. Without a cure, we move a day closer to the sad reality of Sanfillipo syndrome claiming another childs life, far too soon. But with your help we can also be one day closer to curing this terrible illness and allowing these kids to live a normal life and realize thier dreams!
Never give up.
Thank you again for your generosity, support, and for passing this on to others!
Patrick
Organizer
Patrick Cutter
Organizer
Rochester, NY
Sanfilippo Research Foundation, Inc.
Registered nonprofit
Donations are typically 100% tax deductible in the US.
