<div><strong>OUR STORY</strong>
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<div><strong>SIMON needs HELP! </strong>A new treatment option has become AVAILABLE.
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<div>Simon has Sanfilippo Syndrome. It’s a terminal, neurodegenerative rare disease, and causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life.
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<div>Because of its neurodegenerative nature and multi-system impact, Sanfilippo Syndrome is often called “childhood Alzheimer’s” or “childhood dementia.”
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<div>Children with Sanfilippo Syndrome are born with a single genetic defect, a single change in their DNA, that causes their bodies to lack a necessary enzyme.
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<div>Because of the lack of enzyme, their bodies are unable to breakdown heparan sulfate, a natural cellular waste. Instead, their bodies and particularly brains become clogged with toxic levels, which causes a cascade of detrimental effects and ultimately death.
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<div>Currently there is no FDA-approved treatment or cure. <strong>BUT a phase 2 Enzyme Replacement Therapy (ERT) clinical trial has been showing high efficacy, safety, and effectiveness.</strong> So, the Sanfilippo community has been presented with an opportunity to have an <strong>Expanded Access enzyme replacement treatment</strong> for some children with Sanfilippo Type B, Simon’s type!
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<div>Simon could be <strong>one of just 14 children</strong> in the world to receive life-changing treatment for Sanfilippo Syndrome Type B — a devastating rare disease.
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<div>This could give Simon and others more time, more hope, and a chance to fight back.
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<div>But there’s one big challenge:
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<div>The community must raise <strong>$3.8 million by December 1st </strong>to secure the manufacturing slot for this treatment — or the opportunity disappears.
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<div>A few weeks to change lives. A few weeks to make hope real.
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<div>This isn’t a typical fundraising ask. It’s about buying time — literally — for children whose futures depend on access to this treatment.
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<div>Cure Sanfilippo Foundation and the National MPS Society are working together to make it happen, but they can’t do it alone.
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<div><strong>As of 11/30/2025</strong>, we parents of kids with Sanfilippo Syndrome Type B along with the Foundation and Society have<strong> raised ~$4.2M</strong> for our Type B kids’ chances to benefit from this Expanded Access opportunity!
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<div>With your help, we can keep the momentum going to reach our goal.
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<div><strong>How You Can Help Right Now: </strong>
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<li>Please <strong>donate</strong> what you are able. All donations go to Cure Sanfilippo Foundation (Tax ID: 46-4322131) to secure the manufacturing slot for this treatment and may be <strong>tax deductible</strong>.
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<li>Most importantly, please <strong>share</strong> HelpSimon.com with everyone you know via <strong>social media and email so it keeps spreading</strong>.
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<li>Please <strong>leverage</strong> any avenue you have to make this go viral. Click "Contact" under the "Organizer &amp; Beneficiary" section below to <strong>email us ideas and suggestions</strong>.
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<div>Time is short, but hope is powerful. Together, we can help Simon and the 13 other children reach the gold at the end of the rainbow.
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<div>Much love for your continued support,
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<div>Alina and Jeremy (Simon’s parents)
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<div>#HelpSimon #ExpandedAccess #RareDisease #EnzymeReplacementTherapy #SanfilippoSyndrome #hope
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</div><img alt="60941145_1636727785615795_r.jpeg" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/60941145_1636727785615795_r.jpeg" width="100%" />
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<div><strong>Follow the latest:</strong>
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<div><strong>-- On Facebook:</strong> <a href="https://Facebook.com/HelpSimonNow" target="_blank" rel="noreferrer noopener"><a href="https://Facebook.com/HelpSimonNow" target="_blank" class="" rel="nofollow noopener noreferrer">https://Facebook.com/HelpSimonNow</a></a>
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<div><strong>-- On TikTok:</strong> <a href="https://TikTok.com/" target="_blank" rel="noreferrer noopener"><a href="https://TikTok.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://TikTok.com/</a></a>@Simons_Shot
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<div><strong>-- On Instagram:</strong> <a href="https://Instagram.com/HelpSimon" target="_blank" rel="noreferrer noopener"><a href="https://Instagram.com/HelpSimon" target="_blank" class="" rel="nofollow noopener noreferrer">https://Instagram.com/HelpSimon</a></a>
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<div><em>**Donations are tax deductible.** </em>
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<div><strong>Tax ID Number</strong>: 46-4322131
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<div><strong>Other ways to donate:</strong>
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<div><strong>-- By Venmo:</strong> <a href="https://CureSanfilippoFoundation.org/SimonVenmo" target="_blank" rel="noreferrer noopener">Click here to donate via Venmo</a> (Comment "Simon Croke")
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<div><strong>-- By Foundation's website: </strong>Go to <a href="https://CureSanfilippoFoundation.org" target="_blank" rel="noreferrer noopener"><a href="https://CureSanfilippoFoundation.org" target="_blank" class="" rel="nofollow noopener noreferrer">https://CureSanfilippoFoundation.org</a></a> (click “Donate” and put “Simon Croke” in the dedication)
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<div><strong>-- By check:</strong> Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. (Include “Simon Croke” in the memo.)
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<div><strong>-- By ApplePay, MicrosoftPay, or ACH:</strong> Go to <a href="https://CureSanfilippoFoundation.org/Donate" target="_blank" rel="noreferrer noopener"><a href="https://CureSanfilippoFoundation.org/Donate" target="_blank" class="" rel="nofollow noopener noreferrer">https://CureSanfilippoFoundation.org/Donate</a></a> and select your preferred payment form at the bottom of the screen. (Include “Simon Croke” in the memo.)
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<div><strong>-- To be a recurring donor (monthly, quarterly, weekly, etc.):</strong> <a href="https://give.curesanfilippofoundation.org/HelpSimonMonthly" target="_blank" rel="noreferrer noopener"><a href="https://give.curesanfilippofoundation.org/HelpSimonMonthly" target="_blank" class="" rel="nofollow noopener noreferrer">https://give.curesanfilippofoundation.org/HelpSimonMonthly</a></a> (Include “Simon Croke” in the memo.)
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<div><strong>Special thanks to the artists who graciously dedicated their time and talent:</strong>
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<div>Video by Paul Shirley (<a href="https://www.paullikescameras.com/" target="_blank" rel="noreferrer noopener"><a href="https://www.paullikescameras.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.paullikescameras.com/</a></a>)
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<div>Video Editing by Ben Von Wong (<a href="https://www.vonwong.com/" target="_blank" rel="noreferrer noopener"><a href="https://www.vonwong.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.vonwong.com/</a></a>)
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<div>Original music by KeithTim Anderson (<a href="https://keithtimanderson.com/" target="_blank" rel="noreferrer noopener"><a href="https://keithtimanderson.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://keithtimanderson.com/</a></a>) ISRC: QZELS2190001
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<div>Audio mastering by Andrew Kesler (<a href="https://andrewkesler.com/" target="_blank" rel="noreferrer noopener"><a href="https://andrewkesler.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://andrewkesler.com/</a></a>) 
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<div>Photography by Amy Mikler Kenyon (<a href="https://amymikler.com/" target="_blank" rel="noreferrer noopener"><a href="https://amymikler.com/" target="_blank" class="" rel="nofollow noopener noreferrer">https://amymikler.com/</a></a>)
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<div><strong>Information for the media:</strong> <a href="https://CureSanfilippoFoundation.org/HelpSimon" target="_blank" rel="noreferrer noopener"><a href="https://CureSanfilippoFoundation.org/HelpSimon" target="_blank" class="" rel="nofollow noopener noreferrer">https://CureSanfilippoFoundation.org/HelpSimon</a></a>
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<div><strong>WHERE IS YOUR MONEY GOING?</strong>
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<div>Every dollar goes to Cure Sanfilippo Foundation, a 501(c)(3) nonprofit organization helping to secure the manufacturing slot for this treatment — or the opportunity disappears. Donations may be tax deductible. <strong>NOTE: </strong>$382,856 of the HelpSimon.com funds has already been spent on the CRL01 and stem cell projects, so all funds donated above this dollar amount are allotted for the Expanded Access Program and will go toward our collective goal of $3.8M by December 1st. 
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Help Simon get Expanded Access to Enzyme Replacement Therapy

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Help Simon get Expanded Access to Enzyme Replacement Therapy

Still $567,267 to go. Help us build momentum.