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Sanfilippo parents unite on TikTok to raise $1M in 1 month for research for the deadly childhood disease

September 2, 2022
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TikTok community donates more than $20,000 in 24 hours to support Sanfilippo research

Several families of children with Sanfilippo Syndrome have been spreading awareness by sharing their journey with the disease and have amassed significant followings on TikTok over the past two years.

Yesterday, these families rallied with Cure Sanfilippo Foundation to launch a first-of-its-kind fundraiser on TikTok, TikTok For a Cure, to help fund Sanfilippo research. Sanfilippo Syndrome is a rapidly degenerative and fatal disease in children, with no available treatments or cure.

In its first 24 hours, people on TikTok have donated more than $20,000 to TikTok For A Cure in honor of the families and their children. Donations to www.TikTokForACure.com support multiple Foundation-funded research projects, with the goal of getting them closer to clinical trials for children with Sanfilippo.

Donations have come from people in the United States, Australia, Canada, Cyprus, Denmark, Great Britain, Iceland, Israel, Netherlands, New Zealand, Norway, Portugal, Singapore, Spain, Sweden, and the United Arab Emirates.

The parents announced the ambitious campaign in bittersweet messages, acknowledging the difficulties of watching their children change as Sanfilippo progresses and expressing their deep thanks for their followers for their interest in, acceptance of, and support of their children.

TikTok For A Cure is led by parent creators:

  • Noelle Pacl (son Logan, age 15, Sanfilippo IIIA) @Love_Logan07, 3.2 million followers, 109.7 million likes
  • Carrie Fowler (daughter Haidyn, age 7, Sanfilippo IIIA) @HaidynsHope, 1.1 million followers, 53.9 million likes
  • Jennifer Sarkar (son Carter, age 10, Sanfilippo IIIA) @IAmMrsNesbitt, 336,900 followers, 17.2 million likes

Other families participating are @HappyLagardeless, @Simons_Shot, @SavingSadieRae, @SaveConnorNow, @Abbys_Alliance, @RallyingForReagan, and @LoraleisLovelyLife5, along with the Foundation (@CureSanfilippo). Together, these Sanfilippo families have 5.25 million followers.

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In a rare disease like Sanfilippo Syndrome, it is often the parents and patient advocacy groups who are left to fund the research. The unfortunate reality is that large biotech companies don’t see a profit potential and federal grants are scarce and extremely competitive.

“Being on TikTok has allowed us to have an outlet to not only share our family’s story, but educate millions on Sanfilippo Syndrome at the same time,” said Jennifer Sarkar, @IAmMrsNesbitt and mom to Carter (Type A). “We’ve seen firsthand how impactful TikTok can be in spreading information and knowledge and are hopeful that with our incredible followers. We can truly raise this money and bring hope to countless other Sanfilippo families.”

“When we first started on TikTok a year and a half ago, we never thought we would be where we are today [3.2 million followers]. The generosity and love from our followers continue to amaze us. It truly gives us hope that we will one day have a cure for Sanfilippo Syndrome,” said Noelle Pacl, @Love_Logan07 and mom to Logan (Type A).

All donations to TikTok For A Cure go to Cure Sanfilippo Foundation, the nation’s largest nonprofit dedicated to getting an approved therapy for Sanfilippo Syndrome. The Foundation funds research for all types of Sanfilippo and supports treatment approaches such as gene therapy, enzyme replacement, stem cell therapy, reduction of inflammation, and testing FDA-approved drugs for use in Sanfilippo. The Foundation hopes some of these treatments could someday benefit all kids with Sanfilippo, no matter their disease subtype (A, B, C, or D), age, or disease progression.

Followers are cheering on the families by posting comments on the videos, with encouragement such as, “This is an incredible opportunity and I pray this works for you guys! Thank you so much for inspiring and sharing your journey.” “Donated and shared. 1 million in 1 month, let’s do this!” and “It will happen! To all the Logans and their families, you are changing the world.”

“To be honest, I never thought the Foundation would be on TikTok when it came out. But we couldn’t resist the amazing opportunity the platform presents for telling people about Sanfilippo,” said Foundation President and Co-Founder Glenn O’Neill. “The Sanfilippo parents on TikTok are doing an absolutely amazing job spreading awareness. Their followers care deeply about their children and families and regularly ask how they can help.

To the Foundation’s knowledge, this is the first fundraiser like this attempted on TikTok.

“This campaign reminds me of when we launched the ‘Saving Eliza’ video more than eight years ago. It was a new and wild idea at the time. We were feeling scared and helpless, and wondered if it was possible. But people saw our story and generously donated more than $2 million for research, so we know these things can and do happen!” said O’Neill.

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Cure Sanfilippo Foundation is a 501(c)3 nonprofit dedicated to advocating and funding research to bring about treatments and/or a cure for Sanfilippo Syndrome. Cure Sanfilippo has funded 35+ research grants around the world which has helped three clinical trials get underway, to date, treating children with Sanfilippo Syndrome. The Foundation creates and explores innovative and breakthrough research to ensure multiple promising paths are being explored in the effort to save children and better their quality of life. Learn more about Sanfilippo Syndrome and the Foundation at CureSanfilippoFoundation.org.

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