SYNGAP1 Stories

ratings:

Length:

29 episodes

Language:

English

Format:

Podcast

Description

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

Language:

English

Format:

Podcast

Episodes1 - 10 of 29 episodes

Play	Title		Save
	Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter's journey in life and across the US for 3 studies! Show Notes Rainy Schlosser is in the middle of a 7,500 mile drive-a-thon to participate... 42 minutes	Apr 11, 2024
	Jackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents. Show Notes In this special episode, guest host Jessica Johnson talks with Jackie Kancir... 43 minutes	Mar 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. Show Notes The most moving episode yet! Paulina Polanco is caregiver to her twin sister... 52 minutes	Feb 13, 2024
	Jessica Johnson, SRF Volunteer and SYNGAP1 Mom shares her positive outlook on raising her son Kai. Show Notes Living with SYNGAP1 can be challenging, but approaching it with a positive o... 46 minutes	Jan 30, 2024
	Hilary Volz, SYNGAP1 Mom to Brycen, talks about Disney movies, genetic testing, behaviors, & more! Show Notes: We open 2024 where we left off in 2023 - great advice! Hilary Volz joins As... 36 minutes	Jan 09, 2024
	Special Episode - On Giving Tuesday, we present the best advice from SYNGAP1 Stories guests from the past year! Show Notes: This is the Best Episode of 2023! Every SYNGAP1 parent had a story to tell ... 50 minutes	Nov 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! Show Notes: It’s been almost a year of SYNGAP1 Stories with Ashley Frye, and while Ashl... 36 minutes	Nov 14, 2023
	FAQs for SRF’s SYNGAP1 Conference 2023 - Operations Mgr. Lauren Perry joined Ashley recently with all you need to know. Show Notes: This episode is dedicated to the upcoming SYNGAP1 Conference 2023, hosted b... 15 minutes	Oct 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! Show Notes: Nancy Kessler is an SRF BOD member, an active volunteer & advocate, and has... 37 minutes	Oct 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. Show Notes: Julie Miles is an SRF Board Member, Volunteer, and organizes the upcoming e... 47 minutes	Oct 03, 2023

Discover this podcast and so much more

SYNGAP1 Stories

SYNGAP1 Stories

Description

Episodes1 - 10 of 29 episodes

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

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

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.

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

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

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

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

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

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!

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

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

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

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.

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

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

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

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

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

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!

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