SYNGAP1 Stories
CURE SYNGAP1, 501(c)(3) fka SynGAP Research Fund
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Beata Tarasiuk - Part 2: CURE SYNGAP1 Volunteer talks about the SYNGAP1 Polska community, advancements toward a cure, inclusion, her Polish-language podcast, and her dream for us all.
Part 2 of host Jo Ashline's amazing chat with Beata Tarasiuk continues. Today, Beata shares her dream for all families living with SYNGAP1-Related Disorders as they dive deep into starting the Polish…
Beata Tarasiuk - Part 1 of 2: CURE SYNGAP1 Volunteer and Ambassador to the Polish community, joins Jo to talk about Kasia, inclusion, genetic testing, and "coming out" after post-diagnostic grief.
In Part One of this interview, Beata and Jo discuss finding a school for Kasia and the tremendous choices and sacrifices parent caregivers must make in the face of a devastating diagnosis. Overcoming…
Virginie McNamar, CURE SYNGAP1's President & COO, talks with Rainy about Ty's 2016 Dx, dangerous elopement, benefit of Ty's service dog, and the upcoming CURE SYNGAP1 Conference in Atlanta
This episode is packed with insightful advice and personal stories filled. "All he did was miss milestones. There was nothing medically wrong at the time. So we got genetic testing, and SYNGAP1 came…
Kari Imperatore, SYNGAP1 Mom, CFC Coordinator, and Navy Vet, talks about Trajan's genetic testing, the importance of trying, and the best and worst of SYNGAP1 while watching for whales!
New co-host Jo Ashline jumps right in with a touching, insightful conversation with Kari, full of uplifting and challenging experiences and advice, connecting the entire SYNGAP1 community.If you…
SRF Board member John Hill talks about grand-niece Kiera's progress, love for swimming, the upcoming Gala for SYNGAP1, and volunteering with SRF as an extended family member and a retiree.
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.Kiera's Warrior StoryLipman Family MovieFifth Annual SRF…
Nicole Ciccone, Mom to Syngapian Jackson, shares heartfelt stories about Jackson's accidental diagnosis, advocating for our children, and treasuring small milestones in their lives.
This is another open and honest discussion of living with SYNGAP1-related disorders - the difficulties Jackson has faced, the tremendous achievements he has made, and helping each other in the…
Jo Ashline, writer & SRF Volunteer, shares some advice as the Mom of an adult Syngapian, 23-yo Andrew.
This episode gets very personal about the language of behaviors, a long road to a SYNGAP1 diagnosis, the strength of the SRF community, as well as the personal crisis of Andrew's emotional and…
Eric Moulton, SRF Board Member and SYNGAP1 Dad, talks about Phoebe, schools, receiving her diagnosis, raising $60,000+ for Sprint4Syngap, and more!
Show NotesEric Moulton talks with Rainy about his daughter Phoebe - going to a French-language school, her chance epilepsy diagnosis, getting involved in finding a cure, and raising over $60,000 for…
Kathryn Helde, SRF's CSO and SYNGAP1 Mom talks about her adult son Joey, genetic testing, hippotherapy, and Joey's words!
Show NotesSRF’s CSO Kathryn Helde, PhD talks with Rainy about her son Joey - living in a group home, rock climbing, DIR therapy, genetic testing & reports, and advice on avoiding isolation. "He…
Chelsey and Anthony Navarro, SRF's Science Writer and Resource Mobilization Director (resp.), talk about daughter Emmy, grieving, preparing for the future, and expanding your community.
Show NotesWe're back with a double interview. Chelsey Navarro, SRF's Science Writer, and Anthony Navarro, SRF's Resource Mobilization Director in charge of fundraising, talk with Rainy about grieving…
Zoe Bailey, SRF's Volunteer Coordinator, talks about finding SRF, volunteering, the SYNGAP1 conference and Zoe's daughter Kaia.
Show Notes Zoe Bailey, SRF's Volunteer Coordinator and State Ambassador and Advocacy Lead (California), talks about grieving after the diagnosis, finding SRF, volunteering, and the recent SYNGAP1…
Stacey Miller, 2024 SYNGAP1 Conference Director, chats with new co-host Rainy Schlosser about the conference and Stacey's son, Jack.
Show Notes Stacey Miller, SRF's 2024 SYNGAP1 Conference Director and SRF's State Ambassador (Idaho), talks all things Conference, connecting with the SRF community, her son Jack's diagnosis,…
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 in 3 studies to help find a cure for SYNGAP1. She talks with Ashley about the studies, her daughter Hope's…
Jackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents.
Show NotesIn this special episode, guest host Jessica Johnson talks with Jackie Kancir. The two SYNGAP1 Moms discuss education systems, on the farm with Jadyne (Jackie's daughter), make-up,…
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 sisters Libertad (Libby) and Esperanza (Espy). She delivered a raw, personal address at the 2023 SYNGAP1 Conference…
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 outlook is important. Listen to Jessica Johnson chat with Ashley to talk about her son Kai, who has SYNGAP1. They…
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 Ashley to talk about her son Brycen, who has SYNGAP1. They discuss Brycen's favorite (and not so favorite) Disney…
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 Ashley and advice for others. This compilation has it all! Good advice is good at any time, no matter how many…
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 Ashley buttons up plans for the upcoming SYNGAP1 Conference 2023, hosted by SRF, we have a special episode for you.…
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 by SRF. Pricing goes up after 10/31. Registration closes 11/8. Don't delay! Register now here! Special Thank you…
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SYNGAP1 Stories has published 41 episodes since January 2023, covering topics in Kids & Family, Parenting.
SYNGAP1 Stories is currently highly active with new episodes monthly. Average episode length is 42m.
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