They’re losing their voices. The ability to walk. The ability to eat by mouth. And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong. More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care. Please sign the letter and share this post to tell the FDA our kids can’t wait. (see link in comments) #ApproveHopeNow #NoMoreDelays | Cure Sa
0:28
They’re losing their voices. The ability to walk. The ability to eat by mouth. And while Sanfilippo syndrome marches on, the FDA has delayed a promising treatment despite acknowledging the science is strong. More than 21,000 people have signed our letter urging the FDA to act with urgency. But we only have until August 6 to show them how many people care. Please sign the letter and share this post to tell the FDA our kids can’t wait. (see link in comments) #ApproveHopeNow #NoMoreDelays | Cure Sa
14K views10 months ago
FacebookCure Sanfilippo Foundation
This is how we do it … Creating Alex’s nighttime routine (Life with Sanfilippo Syndrome)
1:30
This is how we do it … Creating Alex’s nighttime routine (Life with Sanfilippo Syndrome)
2.7K viewsFeb 28, 2025
YouTubeCure Sanfilippo Foundation
Wishing you a beautiful day filled with all your favorites, Abby! - with Abby's Alliance - Battling Sanfilippo Syndrome | Cure Sanfilippo Foundation
0:33
Wishing you a beautiful day filled with all your favorites, Abby! - with Abby's Alliance - Battling Sanfilippo Syndrome | Cure Sanfilippo Foundation
1.6K views10 months ago
FacebookCure Sanfilippo Foundation
Remembering the bright light of Lucas' precious life and thinking of everyone who loves him. | Cure Sanfilippo Foundation
0:24
Remembering the bright light of Lucas' precious life and thinking of everyone who loves him. | Cure Sanfilippo Foundation
8.2K views5 months ago
FacebookCure Sanfilippo Foundation
This is how we do it … Creating Alex’s nighttime routine (Life with Sanfilippo Syndrome) | Cure Sanfilippo Foundation
1:30
This is how we do it … Creating Alex’s nighttime routine (Life with Sanfilippo Syndrome) | Cure Sanfilippo Foundation
1.9K viewsFeb 28, 2025
FacebookCure Sanfilippo Foundation
What a family says about hippotherapy Sanfilippo Syndrome | Cure Sanfilippo Foundation
1:28
What a family says about hippotherapy Sanfilippo Syndrome | Cure Sanfilippo Foundation
969 views11 months ago
FacebookCure Sanfilippo Foundation
Remembering beautiful Trinady, today especially, on her birthday. Fly high! - with Trinadys Troops | Cure Sanfilippo Foundation
0:24
Remembering beautiful Trinady, today especially, on her birthday. Fly high! - with Trinadys Troops | Cure Sanfilippo Foundation
12.7K views4 months ago
FacebookCure Sanfilippo Foundation
0:24
Remembering precious Blair today and her profound impact on the world. - with The Blair Banner | Cure Sanfilippo Foundation
11.3K views5 months ago
FacebookCure Sanfilippo Foundation
0:24
Remembering sweet Jackson today and thinking of all who love him. - with Hope and Action for Jackson- Cure Sanfilippo | Cure Sanfilippo Foundation
13.3K views5 months ago
FacebookCure Sanfilippo Foundation
0:25
Thinking of this special soul today. You are missed deeply, Abigail. - with Fight For Abigail | Cure Sanfilippo Foundation
27.3K views5 months ago
FacebookCure Sanfilippo Foundation
0:32
Full segment COMING TOMORROW. Thankful to A Moment of Xen, iHeartRadio and We Play It Forward Foundation for spreading more awareness and fundraising for Cure Sanfilippo Foundation research! The segment will air at the below locations and times: 710 WOR (TRI-STATE AREA) Radio Premiere: 12/20 9pm ET AM 920 The ANSWER (ATL) Radio Premiere: 12/27 8pm ET AM 870 The ANSWER (LA) Radio Premiere: 12/27 10pm PT KLIF 570 AM (DALLAS) Radio Premiere: 12/27 7pm CT WNEW HD3 FM NYC Radio Premiere: 12/27 9am ET
2.6K views5 months ago
FacebookCure Sanfilippo Foundation
0:24
Remembering the beautiful life of Danny, today, on his birthday. - with Cindy Lock Feinour | Cure Sanfilippo Foundation
32.2K views6 months ago
FacebookCure Sanfilippo Foundation
0:08
Abby's Alliance - Battling Sanfilippo Syndrome Cure Sanfilippo Foundation National MPS Society Team Sanfilippo TSF INC #memories | Taci Lynn
156.5K views8 months ago
FacebookTaci Lynn
0:37
Sanfilippo Foundation Fundraiser for Paderewski Symphony Orchestra PASO Barington IL 05 09 26
402 views3 weeks ago
YouTubeRichard Kaczor
5:56
Life with Sanfilippo Syndrome presents unique challenges to every aspect of life. Families of children with Sanfilippo Syndrome are generously allowing us to share with you how they tackle different aspects of their life to ensure their child has the best care and quality of life. And it couldn’t be more poignant than to launch this series on #RareDiseaseDay. Meet Julie, mom of 21-year-old Alex who has Sanfilippo Syndrome Type B. She is sharing their nighttime routine with Alex, some of the chal
5.9K viewsFeb 28, 2025
FacebookCure Sanfilippo Foundation
3:14
How far are you willing to go, to save your daughter's life? We need everyone who sees this to please watch & share! #SaveLydia www.GoFundMe.com/SaveLydia | Cure Sanfilippo Foundation
89.4K viewsOct 18, 2024
FacebookCure Sanfilippo Foundation
0:59
Action saves lives. Action creates miracles. Will you help us take action for World Sanfilippo Awareness Day? Tell someone about Sanfilippo or contribute a few dollars to Cure Sanfilippo Foundation. This amazing organization was founded by Eliza’s parents ten years ago. They fund groundbreaking research and initiatives to get us closer to approved treatments in children. Happy birthday, Eliza. Your impact on the world in just 14 years has been remarkable. The original video was made by the brill
101.8K viewsNov 17, 2023
FacebookSaving Sadie Rae: Cure Sanfilippo
1:27
How we do it … Planning for long-distance travel with Asher (Life with Sanfilippo Syndrome)
566 viewsMar 14, 2025
YouTubeCure Sanfilippo Foundation
0:25
Forever remembered for the light he brought to the world, today we celebrate Blake's birthday. - with Ashley Froehlich | Cure Sanfilippo Foundation
14.8K views7 months ago
FacebookCure Sanfilippo Foundation
0:25
Remembering precious Rowen today and sending strength to his family. - with Rowen's Rally. The experience because of Sanfilippo - mps3a | Cure Sanfilippo Foundation
3.1K views11 months ago
FacebookCure Sanfilippo Foundation
See more
Static thumbnail place holder