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SYNGAP1 Stories

SYNGAP1 is a rare disease that affects Ashley Frye's son Nathan. As of January 1, 2024, there are 1,339 people in the world diagnosed with SYNGAP1. There is no treatment. There is no cure. In each episode of SYNGAP1 Stories, Ashley will chat with SynGap parents, volunteers, caregivers, researchers, and partners about their journey with SYNGAP1 in their lives. Their joys and successes, as well as heartaches and advice, will be discussed in this heart-warming series as we support the SynGap community. #841128

Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter's journey in life and across the US for 3 studies!

42 mins; April 11, 2024

Jackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents.

43 mins; March 03, 2024

Paulina Polanco, SRF volunteer and sibling to twin sisters with SYNGAP1 shares her very personal story of loss of what could have been, love, and hope.

52 mins; February 13, 2024

Jessica Johnson, SRF Volunteer and SYNGAP1 Mom shares her positive outlook on raising her son Kai.

46 mins; January 29, 2024

Hilary Volz, SYNGAP1 Mom to Brycen, talks about Disney movies, genetic testing, behaviors, & more!

36 mins; January 09, 2024

Special Episode - On Giving Tuesday, we present the best advice from SYNGAP1 Stories guests from the past year!

50 mins; November 28, 2023

Special Episode - The Best of Ashley! Clips from the past year's episodes featuring Ashley's story, her advice, and always, her compassion!

36 mins; November 14, 2023

FAQs for SRF’s SYNGAP1 Conference 2023 - Operations Mgr. Lauren Perry joined Ashley recently with all you need to know.

15 mins; October 31, 2023

Nancy Kessler, SRF BOD member, talks about her sister, Caren, the oldest known person living with SYNGAP1 at age 67. A fascinating story - check links in show notes for even more of her story!

37 mins; October 17, 2023

Julie Miles, SRF BOD member, talks about Miller's SYNGAP1 journey, getting 'The Call', activities Miller loves, the upcoming Scramble for SynGAP, & patience.

47 mins; October 03, 2023

Sydney & Brett Stelmaszek, SRF volunteers, share their journey with their 3 sons to find the best care for Emmitt, diagnosed w/ SYNGAP1 in 2019.

68 hours 31 mins; September 19, 2023

Vicky Arteaga is the Latin America Director of SRF & SYNGAP1 Mom to Amelia. Her efforts help the SYNGAP1 community in Latin America & across the globe.

35 mins; September 12, 2023

Mike Graglia, SRF Managing Dir. & SYNGAP1 Dad to Tony. Going back to school can be difficult. Tony's experience shows that it's so much harder for kids with SYNGAP1!

51 mins; August 29, 2023

Samar Katnani, SRF Volunteer and Mom to 3yo Syngapian Reema, talks honestly about meds, sharing your story, self-help, fake crying, & much more.

41 mins; August 22, 2023

Suzanne Jones, SRF BOD chair & Mom to Syngapian Jansen, talks about raising funds for SRF, including the upcoming SynGAP Soirée, and raising Jansen!

46 mins; August 08, 2023

This week's guest is Stefanie Decker, SYNGAP1 Mom to 5-year-old Saydee, who has "the best smile"!

31 mins; July 25, 2023

In this very candid episode, SYNGAP1 Mom Monica Harding opens up to Ashley about her 17-year-old son Jaxon.

60 hours 14 mins; July 11, 2023

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

39 mins; June 27, 2023

Ashley talks with Danielle Williams, Mom to two daughters in Australia, each with SYNGAP1.

43 mins; June 13, 2023

If you know about SYNGAP1, you likely know this week's guest Lauren Perry, SRF's Operation Mgr. Lauren & Ashley share stories about Will & more than a few laughs!

38 mins; May 30, 2023

Ashley chats with Certified Christian Life Coach Heather Bensch about her daughter McKaela, who was diagnosed with SYNGAP1 as an adult.

37 mins; May 16, 2023

Peter Halliburton, SYNGAP1 Dad & head of SRF's Resource Mobilization team, joins Ashley.

46 mins; May 02, 2023

It's Ashley's turn, as she talks about her beginnings of volunteering for SRF and what she's working on now! Pickleball, anyone?

31 mins; April 18, 2023

How Can a Service Dog Help Your SYNGAP1 or Other Rare Disease Child? Listen as Cecilia Anastos Chats with Ashley.

32 mins; April 04, 2023

Kali Worth, SYNGAP1 Mom to Kailyn (Kai) is Ashley's guest.

32 mins; March 21, 2023

Ashley's Guest - SRF Community Activation Leader Corey Baysden

33 mins; March 06, 2023

Ashley talks to SRF Co-founder Mike Graglia

26 mins; February 20, 2023

Our Host - Ashley Frye tells her family's SYNGAP1 Story

29 mins; February 07, 2023

Trailer

1 min; January 23, 2023

SYNGAP1 Stories

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