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SYNGAP1 Stories
SYNGAP1 Stories episodes
- Mike Graglia, CURE SYNGAP1 Founder, CEO, & SYNGAP1 Dad to Tony shares a very personal family update.
Show Notes:
"When your kids are tiny, we've all said it ... 'Nobody can take care of this kid but us!' And we believed that ... until about a year ago."
Mike Graglia, Co-Founder and CEO of CURE SYNGAP1, and Dad to Syngapian Tony, joins Jo to talk about the latest chapter in raising Tony, diagnosed with SYNGAP1-Related Disorders in 2018. It's not always easy to talk about the difficult times in our rare lives, but that makes it even more important to do so. If you've had similar experiences, please email us at [email protected].
If you liked this episode, please give our podcast 5 stars!
Tony’s Warrior Story
Connect with Mike:
- [email protected]
- Mike Graglia’s Bio
- Ashley Evans's Bio
- Mike & Ashley’s Story
Support Mike and Ashley by donating to the upcoming Night of Impact Gala in San Francisco - cureSYNGAP1.org/SF26
Related SYNGAP1 Stories Episodes:
- SYNGAP1 Stories Episode 002 - Mike Graglia
- SYNGAP1 Stories Episode 011 - Ashley Evans
- SYNGAP1 Stories Episode 016 - Mike Graglia
CURE SYNGAP1 2026 Conference in Denver - pre-register to receive updates
Connect with Jo:
- Andrew's Warrior
- [email protected]
- Jo's CURE SYNGAP1 bio
- Instagram
- Jo's personal blog page
CURE SYNGAP1 & SYNGAP1-Related Disorders Info:
- CURE SYNGAP1 fka SynGAP Research Fund (SRF)
- What are SYNGAP1-Related Disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Donate to CURE SYNGAP1
- CURE SYNGAP1 Brochure
- CURE SYNGAP1 Fundraising Resource Page
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
- Why Getting a Genetic Diagnosis Matters
- CURE SYNGAP1's Medical Considerations Document
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- SYNGAP1 Clinical Trials
Other Episode Links:
- Lakemary Center https://lakemary.org/
Connect with CURE SYNGAP1 (@cureSYNGAP1):
- LinkedIn
- Facebook
- Instagram
- YouTube
- X/Twitter
- TikTok
- CURE SYNGAP1 Podcast w/ Mike
- CURE SYNGAP1 Apple Podcast Channel
Syngap Global Network
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 041 - SYNGAP1 Stories, May 15, 2026
#SYNGAP1StoriesTony #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp41 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #CitizenHealth #SyngapGlobalNetwork
47 min - 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 community, the importance of international collaboration and inclusion, volunteering for CURE SYNGAP1, and advocating for adult Syngapians. "There is hope for improvement! If the epilepsy stops, if they learn how to communicate better, if they entertain themselves, if they have more independent lives, then that's meaningful!"
Don't forget to watch Part 1 of this interview - Episode 39 and all other episodes are available at cureSYNGAP1.org/Stories.
If you liked this episode, please give our podcast 5 stars!
Kasia's Warrior Story
Connect with Beata:
- [email protected]
- Beata's CURE SYNGAP1 bio
- LinkedIn
- Beata's Podcast
Other Episode Links:
- CURE SYNGAP1 State Ambassadors
- Get Involved with CURE SYNGAP1
- Volunteer with CURE SYNGAP1
- The Benefits of Citizen: One Mom’s Story
- First SYNGAP1 Family From Poland Goes To CHOP!
CURE SYNGAP1 Poland:
- Website
- Facebook
- Instagram
Connect with Jo:
- Andrew's Warrior
- [email protected]
- Jo's CURE SYNGAP1 bio
- Instagram
- Jo's personal blog page
CURE SYNGAP1 & SYNGAP1-Related Disorders Info:
- CURE SYNGAP1 fka SynGAP Research Fund (SRF)
- What are SYNGAP1-Related Disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Donate to CURE SYNGAP1
- CURE SYNGAP1 Brochure
- CURE SYNGAP1 Fundraising Resource Page
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
- Why Getting a Genetic Diagnosis Matters
- CURE SYNGAP1's Medical Considerations Document
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- SYNGAP1 Clinical Trials
Connect with CURE SYNGAP1 (@cureSYNGAP1):
- LinkedIn
- Facebook
- Instagram
- YouTube
- X/Twitter
- TikTok
- CURE SYNGAP1 Podcast w/ Mike
- CURE SYNGAP1 Apple Podcast Channel
Syngap Global Network
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 040 - Part 2 SYNGAP1 Stories, March 16, 2026
#SYNGAP1StoriesKasia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp40 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #SYNGAP1Poland #SyngapPolska #CitizenHealth #SyngapGlobalNetwork
48 min - 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 her own personal grief to go public about Kasia's journey, Beata began sharing her story, and advocating internationally to help raise awareness of SYNGAP1-Related Disorders and the need for finding a cure.
Part 2 will be out in a couple of weeks!
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Kasia's Warrior Story
Connect with Beata:
- [email protected]
- Beata's CURE SYNGAP1 bio
- LinkedIn
- Beata's Podcast
Other Episode Links:
- CURE SYNGAP1 State Ambassadors
- Get Involved with CURE SYNGAP1
- Volunteer with CURE SYNGAP1
- The Benefits of Citizen: One Mom’s Story
- First SYNGAP1 Family From Poland Goes To CHOP!
CURE SYNGAP1 Poland:
- Website
Connect with Jo:
- Andrew's Warrior
- [email protected]
- Jo's CURE SYNGAP1 bio
- Instagram
- Jo's personal blog page
CURE SYNGAP1 & SYNGAP1-Related Disorders Info:
- CURE SYNGAP1 fka SynGAP Research Fund - https://cureSYNGAP1.org/
- What are SYNGAP1-Related Disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Donate to CURE SYNGAP1
- CURE SYNGAP1 Brochure
- CURE SYNGAP1 Fundraising Resource Page
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
- Why Getting a Genetic Diagnosis Matters
- CURE SYNGAP1's Medical Considerations Document
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- SYNGAP1 Clinical Trials
Connect with CURE SYNGAP1 (@cureSYNGAP1):
- LinkedIn
- Facebook
- Instagram
- YouTube
- X/Twitter
- TikTok
- CURE SYNGAP1 Podcast w/ Mike
- CURE SYNGAP1 Apple Podcast Channel
Syngap Global Network
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 039 - Part 1 SYNGAP1 Stories, February 27, 2026
#SYNGAP1StoriesKasia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp39 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #SYNGAP1Poland #SyngapPolska #CitizenHealth #SyngapGlobalNetwork
48 min - 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 back. For us, it was crushing, because there was no more hope that he would just catch up. Our world was turned upside down."
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Ty's Warrior Story
Connect with Virginie:
- [email protected]
- Virginie's CURE SYNGAP1 bio
Other Episode Links:
- Get Involved with SRF
- Volunteer with SRF
- Press Release announcing new President/COO
- Early Global Leaders of SYNGAP1 Community
Connect with Rainy:
- [email protected]
- Rainy's CURE SYNGAP1 Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
CURE SYNGAP1 & SYNGAP1-Related Disorders Info:
- CURE SYNGAP1 aka SynGAP Research Fund - https://cureSYNGAP1.org/
- What are SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Donate to CURE SYNGAP1
- CURE SYNGAP1 Brochure
- CURE SYNGAP1 Fundraising Resource Page
- CURE SYNGAP1's State Ambassador Program
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- CURE SYNGAP1's Medical Considerations Document
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Citizen Health
- Clinical Trials
- Frazier Eye Study
- The EMERALD Trial
Connect with CURE SYNGAP1 (@cureSYNGAP1):
- LinkedIn
- Facebook
- Instagram
- YouTube
- X/Twitter
- TikTok
- SYNGAP10 Weekly Video Podcast w/ Mike
- CURE SYNGAP1 Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 038 SYNGAP1 Stories, October 22, 2025
#SYNGAP1StoriesTy #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp38 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #CitizenHealth
47 min - 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 liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Trajan's Warrior Story
Connect with Kari:
- [email protected]
- Kari's SRF bio
Connect with Jo:
- Andrew's Warrior Story
- [email protected]
- Jo's SRF bio
- Follow Jo on Instagram
- Jo's personal blog page
Episode Links:
- Combined Federal Campaign (CFC)
- Kari's speech at the 2025 SYNGAP1 Gala
- Information about CHOP NHS
- Information about Colorado NHS (CHCO)
- Register for the 2025 Cure SYNGAP1 Conference in Atlanta
SRF & SYNGAP1 Info:
- Syngap Research Fund - https://cureSYNGAP1.org/
- What are SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Donate to SRF
- SRF SYNGAP1 Brochure
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Citizen Health
- Clinical Trials
- Frazier Eye Study
- The EMERALD Trial
More Links:
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- SRF Grants
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
- LinkedIn
- Facebook
- Instagram
- YouTube
- X/Twitter
- TikTok
- SYNGAP10 Weekly Video Podcast w/ Mike
- SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 037 SYNGAP1 Stories, September 3, 2025
#SYNGAP1StoriesTrajan #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp37 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #CFC #NavyVeteran #Veteran #WhaleWatching
1 hr 1 min - 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 Story
Lipman Family Movie
Fifth Annual SRF Gala for SYNGAP1 – 2025
- Donate and Tickets
- Caren - oldest known person with SRD
- Kathryn Helde - keynote speaker at Gala
Connect with John:
- SRF Bio
- Follow on LinkedIn (2nd account)
Other Episode Links:
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
Connect with Rainy:
- [email protected]
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
SRF Event Links:
- Beacon of Hope: A Benefit for SYNGAP1
- Fourth Annual Scramble for SynGAP – 2025
- SRF Calendar
SRF & SYNGAP1 Info:
- Syngap Research Fund - https://cureSYNGAP1.org/
- What is SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Register for the 2025 Cure SYNGAP1 Conference in Atlanta
- Donate to SRF
- SRF SYNGAP1 Brochure
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Citizen Health
- Clinical Trials
- Frazier Eye Study
- The EMERALD Study
More Links:
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- SRF Grants
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
- Facebook
- Twitter
- Instagram
- LinkedIn
- TikTok
- YouTube
- SYNGAP10 Weekly Video Podcast w/ Mike
- SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 036 SYNGAP1 Stories, August 4, 2025
#SYNGAP1StoriesKiera #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp36 #Fundraising #GalaForSyngap1 #Volunteer #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #SelfHelp #Conf25 #Therapy
29 min - 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 SYNGAP1 community.
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Jackson's Warrior Story
Connect with Nicole:
- Follow on Facebook
- Nicole's "Dear Syngap" Post
- Follow on Instagram
Connect with Rainy:
- [email protected]
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
Episode Links:
- Citizen Health
- Fifth Annual SRF Gala for SYNGAP1 – 2025
- Beacon of Hope: A Benefit for SYNGAP1
- Fourth Annual Scramble for SynGAP – 2025
SRF & SYNGAP1 Info:
- Syngap Research Fund - https://cureSYNGAP1.org/
- What is SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
- Donate to SRF
- SRF SYNGAP1 Brochure
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Clinical Trials
- Frazier Eye Study
More Links:
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- SRF Grants
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
- Facebook
- Twitter
- Instagram
- LinkedIn
- TikTok
- YouTube
- SYNGAP10 Weekly Video Podcast w/ Mike
- SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 035 SYNGAP1 Stories, July 1, 2025
#SYNGAP1StoriesJackson #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp35 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy
38 min - 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 physical abuse to which he was subjected when he was ten.
If you liked this episode, please give our podcast 5 stars! All episodes are also available at cureSYNGAP1.org/Stories.
Connect with Jo:
- Andrew's Warrior Story
- [email protected]
- Jo's SRF bio
- Follow Jo on Instagram
- Jo's personal blog page
Jo's SRF Blogs:
- We Were Searching for Syngap; We Just Didn’t Know It
- Meet the Global Village of Syngap Leaders
Connect with Rainy:
- [email protected]
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
Episode Links:
- Splash For Syngap
- SRF Blog Collection
- SRF Advocacy Page
- California's Self Determination Program
- Traveling with Special Needs Blogs
- EdSource article
- CBS News article
- NBC News article
SRF & SYNGAP1 Info:
- Syngap Research Fund - https://cureSYNGAP1.org/
- What is SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
- Donate to SRF
- SRF SYNGAP1 Brochure
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Clinical Trials
- Frazier Eye Study
- Citizen Health
More Links:
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- SRF Grants
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
- Facebook
- Twitter
- Instagram
- LinkedIn
- TikTok
- YouTube
- SYNGAP10 Weekly Video Podcast w/ Mike
- SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 034 SYNGAP1 Stories, June 5, 2025
#SYNGAP1StoriesAndrew #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp34 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #SplashForSyngap
1 hr 3 min - Eric Moulton, SRF Board Member and SYNGAP1 Dad, talks about Phoebe, schools, receiving her diagnosis, raising $60,000+ for Sprint4Syngap, and more!
Show Notes
Eric 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 SYNGAP1 research. "Once you have that diagnosis, it really rocks your world, it changes your expectations - then what are you going to do about it?"
All episodes are available at cureSYNGAP1.org/Stories.
Connect with Eric and Emily:
- Phoebe's Warrior Story
- Phoebe's Fight - Sprint4Syngap Page
- [email protected]
- [email protected]
- Eric's SRF bio
- Emily's SRF bio
Connect with Rainy:
- [email protected]
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
- Rainy and Hope's Cross Country Quest
SRF & SYNGAP1 Info:
- Syngap Research Fund - https://cureSYNGAP1.org/
- What is SYNGAP1-related disorders?
- How Many People Have SYNGAP1?
- SYNGAP1 Resources for Newly Diagnosed Families
- Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
- Donate to SRF
- SRF SYNGAP1 Brochure
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
- Advocate for SYNGAP1
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
- Clinical Trials
- Frazier Eye Study
- Citizen Health
More Links:
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- Sprint4Syngap 2025 (donation page and resource guide)
- SRF Grants
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
- Facebook
- Twitter
- Instagram
- LinkedIn
- TikTok
- YouTube
- SYNGAP10 Weekly Video Podcast w/ Mike
- SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 033 SYNGAP1 Stories, April 8, 2025
#SYNGAP1StoriesPhoebe #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp33 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #SelfHelp #Volunteer #Conf25 #Therapy #Sprint4Syngap
41 min - Kathryn Helde, SRF's CSO and SYNGAP1 Mom talks about her adult son Joey, genetic testing, hippotherapy, and Joey's words!
Show Notes
SRF’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 went to a group home. That took a long time to come to terms with emotionally. That's so much harder than anything else I've ever done."
All episodes are available at cureSYNGAP1.org/Stories.
Connect with Kathryn:
- [email protected]
- Kathryn's SRF bio
Connect with Rainy:
- [email protected]
- Rainy's SRF Bio
- Instagram - @Hope4theCure
- YouTube - @Hope4theCure
- Facebook - Hope SelahMay
- SYNGAP1 Stories Episode 028
SRF & SYNGAP1 Info:
- What is SYNGAP1-related disorders?
- Syngap Research Fund - https://cureSYNGAP1.org/
- SYNGAP1 Resources for Newly Diagnosed Families
- Pre-register for the 2025 Cure SYNGAP1 Conference in Atlanta
- Donate to SRF
- Get Involved with SRF
- Volunteer with SRF
- SRF Fundraising Resource Page
- SRF's State Ambassador Program
- Advocate for SYNGAP1
- Wednesday Warriors
- Supporting SYNGAP1 Siblings
- SYNGAP1 & Epilepsy
- Addressing the Symptoms of SYNGAP1
SYNGAP1 Studies and Trials:
- SYNGAP1 Studies
- SYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence
- Clinical Trials
- Frazier Eye Study
- Citizen Health
More Links:
- Heather Mefford, MD, PhD
- Why Getting a Genetic Diagnosis Matters
- How to Get Free Genetic Testing
- Special Needs Trusts
- Sprint4Syngap 2025 (donation page and resource guide)
- SRF Grants
- SRF Press Releases
- SRF's Medical Considerations Document
Connect with SRF (@cureSYNGAP1):
- Facebook
- Twitter
- Instagram
- LinkedIn
- TikTok
- YouTube
- SYNGAP10 Weekly Video Podcast w/ Mike
- SynGAP Research Fund Apple Podcast Channel
Family Zoom Meeting (bi-weekly on Wednesdays, 8PM ET):
- cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417
Comments: [email protected]
Music: In the Forest... by Lesfm from Pixabay
Episode 032 SYNGAP1 Stories, March 18, 2025
#SYNGAP1StoriesJoey #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp32 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #CureSyngap1Conf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #SelfHelp #Volunteer #Conf25 #RockClimbing #Hippotherapy #Therapy
48 min
About SYNGAP1 Stories
From the publisher's feed
SYNGAP1-Related Disorders are rare genetic disorders that affect Rainy Schlosser's daughter Hope and Jo Ashline's son Andrew. As of January 1, 2026, only 1,707 people in the world were diagnosed.…
There is no cure. In each episode of SYNGAP1 Stories, first developed by Ashley Frye and continued by Rainy and Jo, we chat with SYNGAP1 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 SYNGAP1 community.
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