Our son Connor is an energetic, joyful, and loving 12 year old. And he’s dying. We have one chance to change his fate and it has to happen now. We need your help to save Connor’s life, and children like him.
When Connor was born, our hearts were so full! We had never loved like this before. He is full of love. He has a brilliant smile and loves sports, especially basketball. He hugs everyone and is unfailingly kind. The world is a better place with him in it.
We started becoming concerned about Connor a few years ago when school noticed that he was falling behind. We started visiting doctors and specialists to get answers. Connor was diagnosed with Autism, which caused us to recalibrate the future we envisioned for him. Little did we know the devastation that lay ahead.
Recently, Connor was diagnosed with Sanfilippo Syndrome Type C, a genetic degenerative brain disorder in children caused by a single missing enzyme. It’s the worst disease you’ve never heard of. It’s like Alzheimer’s, but in children. It’s 100% fatal and there currently is no FDA-approved treatment or cure for these suffering children.
Because Connor lacks this single enzyme, toxic storage material is building up in his brain every second and damaging it. As the degeneration rapidly progresses, Connor will stop walking, stop talking, stop being able to feed himself. He’ll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then he’ll die. All in the coming years.
Today, Connor loves being with his friends who have known him since he was 3-years-old. Running and playing with them and his younger brother, Keenan. Connor loves anything active and outdoors, and plenty of snacks! We know without a cure, all of this goes away.
But there is hope! Researchers at UT Southwestern in Dallas, TX, are ready to conduct the first-ever gene therapy clinical trial for Connor’s type of Sanfilippo Syndrome. Research for this gene therapy has shown in pre-clinical models that it can stop the disease. This clinical trial is the crucial step of determining whether earlier research is able to show the same therapeutic benefits in children.
But it lacks funding. Millions are needed to fund the final pre-clinical steps, gene therapy drug production for children (aka medicine), and the clinical trial costs.
Our goal is to raise $3 million dollars to fund this clinical trial and give Connor a chance at growing up, a chance at life. We can’t just sit back and accept that he’s going to fade away and die, not when there is something that could save him.
This campaign for his LIFE is as urgent as it gets. It’s now or never for Connor.
There is no guarantee Connor will be among the children accepted into the trial. But we have hope and it’s his only chance. And without funding for the clinical trial, his future is certain: death. This truly is our only hope.
A parent’s love for their child is like no other. If you are a parent, you understand. Please, please help save our son.
There are three things we’re asking you to do. A campaign like this can grow quickly if supported and if shared with the masses. We can reach this goal if it goes viral!
1. Please donate what you are able. All donations go to the 501c3 nonprofit Cure Sanfilippo Foundation (Tax ID: 46-4322131) to fund the clinical trial and are tax deductible.
2. Most importantly, please share www.SaveConnor.com with everyone you know via social media and email so it keeps spreading.
3. Please leverage any avenue you have to make this go viral. Send leads or tips via the "Contact Us " link.
Connor can LIVE. Connor can get that chance at LIFE, and it will be thanks to you. But it has to be now.
Our deepest thanks. Words can’t even express how incredibly grateful we are.
Marisa (Connor’s Mom), Mike (Connor’s Dad), and Keenan (Connor’s younger brother)
Follow the latest:
-- On Facebook: Facebook.com/SaveConnorNow
-- On Twitter: Twitter.com/SaveConnorNow
-- On Instagram: Instagram.com/SaveConnorNow
-- On TikTok: TikTok.com/@SaveConnorNow
***Donations are tax-deductible.***
Other ways to donate:
-- Go to CureSanfilippoFoundation.org (click “Donate” and put “Save Connor” in the dedication)
-- By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. Include “Save Connor” in the memo.
-- By wire transfer, ACH, stock gift, crypocurrency, or other form: contact the Foundation for details via CureSanfilippoFoundation.org/Contact-Us.
-- By PayPal: Go to https://www.paypal.com/fundraiser/charity/2009653
-- To donate automatically each month: CureSanfilippoFoundation.org/ConnorMonthly
Special thanks to the artists, who graciously dedicated their time and talent:
Video by Benjamin Von Wong
Photography by Taproot Photography
Original music by KeithTim Anderson
Audio mastering by Andrew Kesler
Information for the media: CureSanfilippoFoundation.org/SaveConnor.
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WHERE IS YOUR MONEY GOING?
Every dollar goes to Cure Sanfilippo Foundation , a 501(c)(3) nonprofit organization helping fund the first-ever gene therapy clinical trial for Sanfilippo Syndrome Type C that can give Connor a chance at life. Donations may be tax deductible. 100% of the funds raised here will go toward the research. We are currently racing against time to fund this trial and get it up and running. It will help Connor and so many other children a chance at life, today and for generations to come. ***Any donations received above the goal will go directly to Cure Sanfilippo Foundation new research projects in need of funding***
WHY SO MUCH MONEY?
Getting a clinical trial up and running can cost millions of dollars. In rare diseases, large pharmaceutical companies have little interest because they don’t see ways to make a profit. The truth is that it is left up to parents to drive and fund the research for treatments and a cure. This will help fund this specific clinical trial that can possibly save Connor and other children with Sanfilippo. If we can’t fund the clinical trial, it will not happen. And we are nearly out of TIME.
TIME IS OF THE ESSENCE
Children’s cognitive abilities are completely taken away quickly once they begin regressing. In time, children regress back to an infantile state, likely never to return. This rapidly-progressive neurodegenerative disease will soon start taking over completely. Connor is 12 years old. We don't want to lose our son. This must happen now.
Learn more about the signs and symptoms of Sanfilippo Syndrome .
- Joey Kish
- Alyssa Van Valzah
- Francisco Franco
Organizer and beneficiary
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