The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Embracing Diversity and Evolution: The Cute Syndrome Foundation Marks 11 Years with a Meaningful Update to Our Logo

5/3/2024

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In honor of our 11th anniversary, The Cute Syndrome Foundation has removed the word “epilepsy” from the SCN8A heart in our logo to recognize the diversity within our community and our evolving understanding of SCN8A mutations. While it may seem like a subtle change, it is an important one.
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When I started The Cute Syndrome 11 years ago in honor of my daughter Esmé, I envisioned it primarily as an outlet for sharing Esmé’s story—including the beautiful moments and the challenges as we navigated her epilepsy, medical complexity, and significant developmental delay. When Esmé’s SCN8A mutation was identified in 2015, we discovered a small community of children that seemed a whole lot like her. At the time, the majority of patients with SCN8A also faced refractory epilepsy as well as physical and developmental disabilities.  ​

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Spreading Joy: Announcing the Awarding of Six Connor James Smith Patient Assistance Grants Totaling Over $15,000

7/3/2023

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In many cases, insurance covers the bare minimum for patients with rare genetic disorders like SCN8A, which leaves families footing the bill for necessary medical equipment, therapy devices, educational aids, medications, outpatient therapy costs, home and vehicle modifications, etc.  The list is a mile long and the expenses add up quickly.
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All of these out-of-pocket costs can create a financial burden that forces caregivers to make difficult choices about: choosing between life-saving medications or necessary medical equipment; choosing to sacrifice the physical health of their bodies because they cannot afford to remodel their bathroom to make it ADA accessible; choosing to pay for costly outpatient therapy instead of enjoying a family activity.

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New Beginnings: A Letter from Founder, Hillary Savoie

7/14/2022

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Hello SCN8A Community,

Founding The Cute Syndrome Foundation and running it these last almost 9 years has been one of the greatest honors of my life. This foundation has been responsible for some of the greatest lessons, friendships, and joys of my life. Sometimes it happens that a thing you've made takes on a life of its own. This is what has happened with TCSF. That is why I am writing today with an announcement: I am thrilled to share with you the appointment of Kacie Craig as our new Executive Director. Many of you know Kacie, mom of Stella, as the host of our Meaningful Change and Clinical Trial Readiness Series. She also runs our weekly book club and has served on TCSF's volunteer executive committee. Kacie will be here to lead TCSF into the next era as we move into expanding our support, engagement, and educational efforts for the SCN8A community.

As I transition to supporting TCSF from a role on the Board of Directors, I am reflecting on the tremendous work we have done over the years. Our family support group and programming has expanded to offer programming year round to serve the educational, social and emotional, and engagement needs of the SCN8A community. Our revenue has increased 10-fold in our time focusing on SCN8A. We are fortunate to have a clinical trial enrolling in our community. This organization is currently run by a number of committed family members of individuals with SCN8A.

I am so proud of what we have accomplished. And I am so thrilled to see what is to come under Kacie's tenure.

With gratitude,
Hillary
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Child Neurology Foundation's Rising Tides Grant

9/7/2020

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In June The Cute Syndrome Foundation received a Rising Tides Grant from Child Neurology Foundation to lift a social and emotional support program off the ground. This program has included zoom yoga and family martial arts classes, food and drink discussion group, a book club and access to meal kits, mindfulness app subscriptions, and gift cards for yoga mats, books, etc. We knew this programming would be meaningful. However, as we dove into it, we began to realize just how much our community needed this—to feel supported, engaged, and connected. Also, simply, to have a bit of fun in the midst of everything. 

We are so grateful to Child Neurology Foundation for not only making this program possible, but doing so in a way that allowed us to quickly and flexibly respond to our community’s needs in real time. Here are two examples of how we were able to do use the funding, and what that gave the community.

Book Club

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TCSF Announces Leadership Change

1/29/2019

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The Cute Syndrome Foundation is announcing the departure of Juliann Bradish, PharmD, as our Co-executive Director. Juliann will be remaining on as a volunteer at TCSF, turning her focus toward the administration of our support group. Juliann began volunteering for TCSF in 2015, serving as our SCN8A Advisor. She then joined Founder Hillary Savoie, PhD, as Co-executive Director in 2017.
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Juliann with her family at our 2016 SCN8A Clinician, Researcher, and Family Gathering

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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).
​
Our tax identification number is: 46-2699066.

© The Cute Syndrome Foundation, All rights reserved
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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