SYNGAP1 Stories

Ashley chats with SRF Co-Founder, and SYNGAP1 Mom to Tony, Ashley Evans on the 5th birthday of SRF!


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Show Notes:

In Episode 11, our host, Ashley, chats with SRF Co-Founder and SYNGAP1 Mom Ashley Evans to celebrate SRF's 5th birthday! They talk about starting SRF, progress made during the past five years, the dedicated community of SRF volunteers, hope for the future, moving, and, of course, Syngapian Tony and his now 5-year-old brother John.

Ashley's SRF bio

Tony's Warrior Story

More links:

Interview with Kayo Conferences

SRF Introductory Video

A Message to the Newly Diagnosed SynGAP-1 Parent

Meet the Global Village of Syngap Leaders

SRF Newsletter Special 5th Birthday Issue 6/27/23

Pathways to a Cure for SYNGAP1

Follow ⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠:

⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠

⁠⁠Facebook⁠⁠

⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠

⁠Nathan’s Warrior Story⁠

SYNGAP1 Stories ⁠⁠Episode 001⁠⁠ - Ashley Frye

SYNGAP1 Stories ⁠⁠Episode 005⁠⁠ - Panda

Panda’s News Story:  ⁠⁠Nathan’s Dog⁠⁠

SRF & SYNGAP1 Info:⁠⁠⁠

⁠What is SYNGAP1?⁠ ⁠⁠⁠

⁠ Syngap Research Fund⁠

Donate: ⁠⁠⁠⁠https://Syngap.Fund/Donate⁠⁠⁠⁠

⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠

⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠

⁠How to Get Free Genetic Testing⁠⁠⁠⁠

⁠⁠⁠ ⁠Special Needs Trusts⁠⁠⁠⁠

Connect with SRF (@curesyngap1):

  ⁠⁠⁠⁠Facebook⁠⁠⁠⁠

  ⁠⁠⁠⁠Twitter⁠⁠⁠⁠

  ⁠⁠⁠⁠Instagram⁠⁠⁠⁠

  ⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠

  ⁠⁠⁠⁠TikTok⁠⁠⁠⁠

  ⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠ w/ Mike

SYNGAP1 Conference 2023, hosted by SRF - ⁠⁠⁠Hotel Reservations⁠⁠⁠

Wednesday SRF Family Zoom Meeting:

⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417

Music: ⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠

Episode 011 SYNGAP1 Stories, June 27, 2023

#SYNGAP1StoriesTony #Syngap #SYNGAP1 #SYNGAP1Stories #siblings #SYNGAP1siblings #founder #rarediseasesiblings #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #yoga

...more
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SYNGAP1 StoriesBy Syngap Research Fund, 501(c)(3)

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