My Pal Spencer #mpsIII

Charlene Aceto Smith is organizing this fundraiser to benefit Cure Sanfilippo Foundation.

Tax deductible

Update 2/15/18 The Wells Warriors wrestling team are raising awareness & crucial funding to find a cure for Spencer. We need a cure before time runs out.

We need your help today to SAVE Spencer, and other kids with Sanfilippo. Their only chance at life is a treatment in an experimental clinical trial. Clinical trials take millions to fund and we are hoping to raise $500,000 to help fund a clinical trial. The clock is ticking and due to the rapid degenerative nature of the disease, time is running out. Very soon, severe dementia could take away all of what Spencer has learned if a cure doesn't come in time. From there it gets much worse. This is TOO MUCH to bare. Please consider giving today and please share, to help save his life!

Our sweet Spencer has Sanfilippo Syndrome. It's known as the Children's Alzheimer's. But worse. Can you imagine? Neither could we.

Sanfilippo is a rare and fatal genetic disease that robs children of their brain function and gradually kills them. Starting often around age 3, Sanfilippo kids begin to lose critical skills. They stop talking. They become extremely hyperactive and can go days without sleep. They lose the ability to walk. They can lose their hearing and their eyesight. Eventually they suffer seizures and stop being able to swallow, meaning they need a feeding tube to survive.

Most kids with Sanfilippo die in their early teens.

And there is no cure.

In fact, there's not even any kind of treatment to help mitigate Sanfilippo's devastating effects.

Spencer already has significant hearing loss; he can't talk like normal 3-year-olds and communicates mostly through some sign language. We are in a race against time to try and save him from this horrible cruel disease.

Can you help?

There are some exciting possible treatments and a possible cure on the horizon -- especially in the realm of gene therapy. We need to fund this as soon as possible so that it can be adminstered to children like Spencer. It's their only chance at LIFE before this severe dementia sets in, followed by life.

Because Sanfilippo is a rare disease, it hasn't attracted interest from big pharmaceutical companies. That means it's up to the families of those suffering to fundraise for the clinical trials that could lead to a cure. With your generosity, we have a chance to help Spencer and other children suffering from Sanfilippo.

Please considering donating today. All funds raised go to the Cure Sanfilippo Foundation, a group of families across America helping to fundraise for these important clinical trials.

No donation amount is too small! All donations are tax-deductible.

Want to know more about Spencer? Follow him on Facebook at My Pal Spencer . And share our campaign!

In the Press
Congdon's After Dark
WGME 13
Bangor Daily News
Seacoast Online
‌Rare Disease Report
Journal Tribune
NESN
207 Maine
Portland Press Herald
WCSH6
York County Coast Star
WGAN News Radio
York County Coast Star
Rome Sentinel
Lexington Wicked Local

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Original Story

Like all toddlers, I love to splash in the pool with my daddy, dance in the yard with my mommy, and pet every puppy dog I can get my hands on. But unlike most boys and girls, I'm battling MPS-III, commonly known as Sanfilippo Syndrome.

Sanfilippo Syndrome is a genetic neurological disorder that can be easily understood as the childhood Alzheimer's. Both are a death sentence, but where Alzheimer’s strikes people toward the end of their lives, Sanfilippo attacks kids just as they have begun to learn to walk and talk. Also unlike Alzheimer’s, Sanfilippo is considered an "orphan disease," which means there isn’t enough incentive for drug companies to pursue a cure.

There are several teams of researchers around the world who are studying ways to treat Sanfilippo kids like me who lack an enzyme that breaks down complex chains of glucose. Sadly, some of the treatments already put through clinical trials have not panned out. What this means is that without more awareness of this terrible disease, and crucially, the money to fund more research, many kids with Sanfilippo will die as their peers head off to high school.

I don't want to be one of them.

I don't want to stop being able to walk. Or talk. And eventually, to swallow. All of which could begin happening, progressively, as early as the year I should be entering kindergarten.

I want to live.

I hope you will help me in this fight.

Follow me on Facebook (My Pal Spencer #mpsIII is Fighting to Cure Sanfilippo Syndrome). Please like and share my page!

All donations will go to the not-for-profit Cure Sanfilippo Foundation, a 501(c)3, and will be used for research to find a cure. Donations are tax-deductible tax ID (46-4322131).