The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Reflecting on 10 Years of The Cute Syndrome Foundation

5/3/2023

3 Comments

 
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Ten years ago, when I started TCSF my daughter Esmé was seizing on average 15 times a week and struggling with extreme medical fragility. Her precarious health meant that nearly everything in our lives had stopped. She and I would spend days out of every week in bed with her sleeping, waking only to seize. It was in this position, pinned in place both figuratively and literally, that I started the foundation. And in all honesty, it was as much of an effort to cast toward some hope of helping Esmé as it was a way for me to maintain my sanity through some seemingly impossible days.

At first the vision was just to tell my daughter’s story and raise some limited funds for research. Both things turned out to be more complicated than I thought. First, Esmé’s genetic diagnoses continued to evolve, moving us through several communities—as she was both over and under diagnosed. Second, understanding what kinds of research best serve a community as it evolves quickly from being entirely uncharacterized to looking toward potential precision treatments, has proven to be an intriguingly complex problem to solve.

The thing that did not turn out to be complicated was the love I feel for this community, and the connection that persisted, even as my daughter’s diagnosis evolved to exclude SCN8A. ​
I am honestly in awe of the things that this foundation has managed to achieve in a decade: 
  • Raising over $1 million
  • Supporting 457 families in 48 countries
  • Combining efforts with the SCN8A support group established in 2014 by Juliann Bradish
  • Helping fund nearly $500,000 in scientific research grants
  • Receiving 6 grants totaling over $50,000
  • Supporting TCSF community events and support programs in excess of $255,000
  • Collaborating closely with the development of two clinical trials currently enrolling in the SCN8A community
  • Working with over 30 volunteers to help us achieve advocacy goals, all of whom are immediate relatives of individuals with SCN8A
  • Engaging the community to impressive results—from 77% response rate in the cross-sectional survey to inform the design of our first clinical trial, to enrolling a retrospective natural history cohort at Ciitizen in under 6 hours

​This is a lot for a group of people to achieve. And make no mistake, it may have begun with me and Esmé, but TCSF has only made the strides it has with a team and by working with the community—earning trust, evolving our efforts in response to the rare disease landscape, and following this community’s lead. As I have stepped away from my role as director and now serve as Board Chair, it has been a tremendous point of pride that this organization has continued to thrive and evolve without my daily involvement.
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It is also true that knowing that TCSF was created out of those painful early years of Esmé’s life—and knowing all the good it has contributed to—has given me such a sense of purpose all these years…and for that I am filled with gratitude to this organization and the community that has made it what it is today, ten years later.

Hillary Savoie
Founder and Board Chair, The Cute Syndrome Foundation


Hear from 9 more of the first support group families below as they share about how TCSF and the SCN8A community have impacted their lives.

Adeline

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Mason

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Cam

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Foster

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Addy

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Ariana

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Natasha

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Ashleigh

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Emma

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3 Comments
emanuel link
5/14/2023 12:22:18 pm

I love how you presented the content in a clear and organized manner. It's easy to follow along.

Reply
Olga Gleason link
5/17/2023 09:34:03 am

"The examples you provided were relatable and helped me connect with the material on a personal level."

Reply
Gwendolyn Edwards link
5/23/2023 12:08:29 pm

"I appreciate the time and effort you put into researching and referencing your sources. It adds credibility to your post."

Reply



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The Cute Syndrome Foundation

PO Box 842 Ozark, MO 65721​
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
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Our tax identification number is: 46-2699066.

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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop