Listen to this podcast in the app for free:
Download for free in the App Store
radio.net
Sleep timer
Save favourites
42 episodes
Mike Graglia, CURE SYNGAP1 Founder, CEO, & SYNGAP1 Dad to Tony shares a very personal family update.
15/05/2026 | 46 mins.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 ed@cureSYNGAP1.org.
If you liked this episode, please give our podcast 5 stars!
Tony’s Warrior Story
Connect with Mike:
mike@cureSYNGAP1.org
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
jo@cureSYNGAP1.org
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: ed@cureSYNGAP1.org
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 #SyngapGlobalNetworkBeata 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.
16/03/2026 | 47 mins.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:
beata@cureSYNGAP1.org
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
jo@cureSYNGAP1.org
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: ed@cureSYNGAP1.org
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 #SyngapGlobalNetworkBeata 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.
27/02/2026 | 47 mins.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:
beata@cureSYNGAP1.org
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
jo@cureSYNGAP1.org
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: ed@cureSYNGAP1.org
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 #SyngapGlobalNetworkVirginie 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
22/10/2025 | 46 mins.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:
virginie@cureSYNGAP1.org
Virginie's CURE SYNGAP1 bio
LinkedIn
Instagram
Facebook
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:
rainy@cureSYNGAP1.org
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: ed@cureSYNGAP1.org
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 #CitizenHealthKari 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!
03/09/2025 | 1hNew 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:
kari@cureSYNGAP1.org
Kari's SRF bio
Connect with Jo:
Andrew's Warrior Story
jo@cureSYNGAP1.org
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: ed@cureSYNGAP1.org
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
More Kids & Family podcasts
Beyond the BumpEducation, Kids & Family, Parenting
Pop Culture ParentingFilm Reviews, Kids & Family, Parenting, Relationships, Society & Culture, TV & Film
Bump with Steph & LauraKids & Family, Parenting, Relationships, Society & Culture
Greeking Out from National Geographic KidsKids & Family, Stories for Kids
Snoop and Sniffy: Dog Detective Stories for KidsKids & Family, Stories for Kids
Imagine ThisKids & Family
Brains On! Science podcast for kidsEducation for Kids, Kids & Family
Koala Moon: Kids Bedtime Stories & Sleep Stories for Kids PodcastKids & Family, Stories for Kids
Kiwi Birth TalesKids & Family, Parenting, Personal Journals, Society & Culture
Silly Stories for KidsFiction, Kids & Family, Stories for Kids
Trending Kids & Family podcasts
Opal Watson: Private EyeKids & Family, Stories for Kids
Hello, BumpKids & Family, Parenting
Blue's Clues & You: Story Time with Josh & BlueKids & Family, Stories for Kids, TV & Film
The Past and The Curious: A History Podcast for Kids and FamiliesKids & Family
Dork Diaries: Tales From a Not-So Fabulous LifeArts, Books, Kids & Family, Stories for Kids
Ready or NotBusiness, Careers, Education, Kids & Family, Parenting, Self-Improvement
Honeybee Bedtime StoriesKids & Family
Dad V Girls After HoursHobbies, Kids & Family, Leisure, Parenting, Relationships, Society & Culture
Food CrimesArts, Food, Kids & Family, True Crime
Dad’s Bedtime StoriesFiction, Kids & Family, Parenting, Stories for Kids
Story time with Philip and Mommy!Kids & Family, Stories for Kids
Football For KidsFootball, Kids & Family, Soccer, Sports, Stories for Kids
Bedtime ExplorersEducation, Education for Kids, Health & Wellness, Kids & Family, Mental Health, Self-Improvement- Bump with Steph & LauraKids & Family, Parenting, Relationships, Society & Culture
Bedtime Stories with Netflix Jr.Fiction, Kids & Family, Stories for Kids, TV & Film
Play School: Ears OnKids & Family
About SYNGAP1 Stories
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.
Podcast websiteListen to SYNGAP1 Stories, Beyond the Bump and many other podcasts from around the world with the radio.net app
Get the free radio.net app
- Stations and podcasts to bookmark
- Stream via Wi-Fi or Bluetooth
- Supports Carplay & Android Auto
- Many other app features
Get the free radio.net app
- Stations and podcasts to bookmark
- Stream via Wi-Fi or Bluetooth
- Supports Carplay & Android Auto
- Many other app features
SYNGAP1 Stories
Scan code,
download the app,
start listening.
download the app,
start listening.
SYNGAP1 Stories: Podcasts in Family
New Zealand