Show Notes:
Suzanne Jones, SRF BOD chair & SYNGAP1 Mom, chats with Ashley about the upcoming Syngap Soirée fundraiser in Atlanta, caregivers, eating out (or not!), Jansen’s behavioral issues as well as her recent speech improvements, and advice to parents to modify their expectations when receiving a rare disease diagnosis.

Connect with Suzanne
SRF BIO
  Facebook
  Instagram
  LinkedIn
Jansen’s Warrior Story
Jansen’s Journey
More links:
  Syngap Soirée, Sparks of Hope - Atlanta, GA, August 26, 2023
  Soirée - Instagram
  Soirée - LinkedIn
  Fundraising
  Article on Jansen in Variantyx
  TV Interview of Jones Family by 11 Alive, Atlanta
Follow ⁠⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠⁠:
SRF Bio
⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠
⁠⁠⁠Facebook⁠⁠
⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠
⁠⁠Nathan’s Warrior Story⁠⁠
SYNGAP1 Stories ⁠⁠⁠Episode 001⁠⁠⁠ - Ashley Frye
SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠
⁠⁠What is SYNGAP1?⁠⁠ ⁠⁠⁠⁠⁠
⁠⁠ Syngap Research Fund⁠⁠ - https://syngapresearchfund.org
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 - ⁠Registration⁠
Wednesday SRF Family Zoom Meeting:
⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417
Comments: ed@curesyngap1.org
Music: ⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠
Episode 014 SYNGAP1 Stories, August 8, 2023
#SYNGAP1StoriesJansen #Syngap #SYNGAP1 #SYNGAP1Stories #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Fundraising #Horses #HorseRiding #Caregivers