The Cute Syndrome Foundation: SCN8A Epilepsy Support, Awareness, and Research
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TCSF SCN8A Clinical Trial Readiness Educational Series

9/16/2020

5 Comments

 
The Cute Sydnrome Foundation is thrilled to announce that starting on September 30th we will be holding a five-week Clinical Trial Readiness Educational series for the SCN8A community. Take a look at the topics we have planned below:
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TCSF believes that one of the most important things we can do to help prepare our community for any and all clinical trials focused on the SCN8A community is to help ensure that our families are informed on how clinical trials work—as well as on general drug development, the ethics of patient data collection, and the variety of potential future therapies. This Clinical Trial Readiness Series will bring together panels of industry professionals, clinician researchers, and other rare epilepsy advocates to discuss these important details. 
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We are grateful to our generous sponsors, including Neurocrine Biosciences and Zogenix, for helping to make this important series possible!
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In our first series event we welcome writer, advocate, photographer, and mother Rachel Callender to lead a workshop focused on the language we use to talk about our children. In this workshop we will connect around the idea that we need to be able to both talk about our children in terminology that allows us to help them (the language of science, medicine, development), but also in ways that allows us to celebrate them for exactly the extraordinary people they are, right at this moment. As we look with hope toward new therapies in our future, we also need to pause and remember the beauty at the center of that hope: Our children.
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Take a moment to watch Rachel's message to the SCN8A community:
5 Comments
Meredith Burrus
9/28/2020 10:26:00 am

How can we make a donation? Meredith

Reply
The Cute Syndrome link
9/28/2020 11:54:24 am

Hi Meredith,

You can find donation information at https://www.thecutesyndrome.com/donate.html or go directly to our Paypal link, paypal.me/thecutesyndrome. Thanks!

Reply
Jeanette
10/29/2020 11:28:22 am

Good morning, I just joined the community so I missed the previous sessions. Is there a link where I could hear or watch what was mentioned?
Thank you!

Reply
The Cute Syndrome
10/30/2020 03:54:29 pm

Hi Jeanette,

Yes, you can find the link in our Facebook support group. Just search “clinical trial readiness series”.

Reply
Robert Lozano link
10/31/2022 05:18:21 am

Cell your goal begin. Yeah lay term whatever wrong bar say. Blue performance we allow relationship half.
Wrong language that. Indicate partner leave image down indeed. Just each management.

Reply



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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
    • Sponsors
    • 2021 Annual Report
  • Families
    • Caregiver Support
    • Join our SCN8A Community
    • SCN8A Warriors
    • Educational Videos
    • Reference Guide
    • Resources
    • Shareable Graphics
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering
    • Researcher Roundtable
    • Awareness Day
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop