EPISODE 8: “A Close Look At Sanfilippo” is a regular 10-minute podcast covering five hot topics regarding Sanfilippo Syndrome, a rapidly degenerative disease in children currently with no FDA-approved treatment.
In this episode Glenn O’Neill, president and co-founder of Cure Sanfilippo Foundation, praises the Sanfilippo Syndrome community as families and organizations globally are raising awareness in celebration of World Sanfilippo Awareness Day, Nov. 16. He encourages that being a part of World Sanfilippo Awareness Day can be as simple as social media posts or personally telling others about these children and their families.
Glenn then announces the launch of a new viral video, Help Simon, on Nov. 16 to raise $1 million for promising research and how watching and sharing the video makes a huge impact.
A new face to the podcast, Foundation Development Associate Lindsey Shealy announces that the second annual Merry & Bright Trivia Gala, Dec. 10, will be a complimentary event for donors, partners families, and industry partners as thanks for all they do. Registration is open for this complimentary, light-hearted night of interactive and jolly trivia. Link to register is below.
Next Glenn explores the power of parents participating in the AllStripes platform. He describes how the platform easily aggregates a child’s medical records into a single source for parents to reference and share with care providers. Additionally, AllStripes provides a huge boost to the future of Sanfilippo research. All of the de-identified data helps create a more extensive pool of natural history data that includes a wide variety of potential research endpoints that could expedite the process for clinical trials to begin. Parents of Sanfilippo Angels, children who have passed away, are especially valuable as AllStripes participants because their de-identified medical records provide a picture of the entire life’s journey with
Sanfilippo.
With Giving Tuesday being a part of the holiday season, Glenn shares that the Foundation and its partner families will be participating in this outpouring of generous support globally. He also explains how Giving Tuesday is among a variety of opportunities the Foundation coordinates so partner families have a variety of opportunities throughout the year from which to choose what ways they would like to support the mission.
World Sanfilippo Awareness Day: https://CureSanfilippoFoundation.org/...
Register for Merry & Bright Trivia Gala Night: https://give.curesanfilippofoundation...
Participate in AllStripes: https://www.allstripes.com/sanfilippo
Questions: Contact@CureSanfilippoFoundation.org
Follow Cure Sanfilippo Foundation:
Facebook: https://www.facebook.com/CureSanfilip...
Twitter: https://twitter.com/CureSanfilippoF
Instagram: https://www.instagram.com/curesanfili...
TikTok: https://www.tiktok.com/@curesanfilippo
#CureSanfilippo #RareDisease #ACureCantWait #ACloseLook #Podcast #HandsOfHope #WorldSanfilippoDay #HelpSimon
Music credit: Springish by Gillicuddy
(https://www.freemusicarchive.org/musi...)
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