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] you liked this episode, please give our podcast 5 stars!Tony’s Warrior StoryConnect with Mike:[email protected] Graglia’s BioAshley Evans's BioMike & Ashley’s StorySupport Mike and Ashley by donating to the upcoming Night of Impact Gala in San Francisco - cureSYNGAP1.org/SF26Related SYNGAP1 Stories Episodes:SYNGAP1 Stories Episode 002 - Mike GragliaSYNGAP1 Stories Episode 011 - Ashley EvansSYNGAP1 Stories Episode 016 - Mike GragliaCURE SYNGAP1 2026 Conference in Denver - pre-register to receive updatesConnect with Jo:Andrew's Warrior [email protected]Jo's CURE SYNGAP1 bioInstagramJo's personal blog pageCURE 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 FamiliesDonate to CURE SYNGAP1CURE SYNGAP1 BrochureCURE SYNGAP1 Fundraising Resource PageWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1Why Getting a Genetic Diagnosis MattersCURE SYNGAP1's Medical Considerations DocumentSYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordSYNGAP1 Clinical TrialsOther Episode Links:Lakemary Center https://lakemary.org/Connect with CURE SYNGAP1 (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokCURE SYNGAP1 Podcast w/ MikeCURE SYNGAP1 Apple Podcast ChannelSyngap Global NetworkComments: [email protected]Music: In the Forest... by Lesfm from PixabayEpisode 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
May 15
46 min
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 StoryConnect with Beata:[email protected]Beata's CURE SYNGAP1 bioLinkedInBeata's PodcastOther Episode Links:CURE SYNGAP1 State AmbassadorsGet Involved with CURE SYNGAP1Volunteer with CURE SYNGAP1The Benefits of Citizen: One Mom’s StoryFirst SYNGAP1 Family From Poland Goes To CHOP!CURE SYNGAP1 Poland:WebsiteFacebookInstagramConnect with Jo:Andrew's Warrior [email protected]Jo's CURE SYNGAP1 bioInstagramJo's personal blog pageCURE 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 FamiliesDonate to CURE SYNGAP1CURE SYNGAP1 BrochureCURE SYNGAP1 Fundraising Resource PageWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1Why Getting a Genetic Diagnosis MattersCURE SYNGAP1's Medical Considerations DocumentSYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordSYNGAP1 Clinical TrialsConnect with CURE SYNGAP1 (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokCURE SYNGAP1 Podcast w/ MikeCURE SYNGAP1 Apple Podcast ChannelSyngap Global NetworkComments: [email protected]Music: In the Forest... by Lesfm from PixabayEpisode 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
Mar 16
47 min
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 StoryConnect with Beata:[email protected]Beata's CURE SYNGAP1 bioLinkedInBeata's PodcastOther Episode Links:CURE SYNGAP1 State AmbassadorsGet Involved with CURE SYNGAP1Volunteer with CURE SYNGAP1The Benefits of Citizen: One Mom’s StoryFirst SYNGAP1 Family From Poland Goes To CHOP!CURE SYNGAP1 Poland:WebsiteFacebookInstagramConnect with Jo:Andrew's Warrior [email protected]Jo's CURE SYNGAP1 bioInstagramJo's personal blog pageCURE 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 FamiliesDonate to CURE SYNGAP1CURE SYNGAP1 BrochureCURE SYNGAP1 Fundraising Resource PageWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1Why Getting a Genetic Diagnosis MattersCURE SYNGAP1's Medical Considerations DocumentSYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordSYNGAP1 Clinical TrialsConnect with CURE SYNGAP1 (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokCURE SYNGAP1 Podcast w/ MikeCURE SYNGAP1 Apple Podcast ChannelSyngap Global NetworkComments: [email protected]Music: In the Forest... by Lesfm from PixabayEpisode 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
Feb 27
47 min
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 StoryConnect with Virginie:[email protected]Virginie's CURE SYNGAP1 bioLinkedInInstagramFacebookOther Episode Links:Get Involved with SRFVolunteer with SRFPress Release announcing new President/COOEarly Global Leaders of SYNGAP1 CommunityConnect with Rainy:[email protected]Rainy's CURE SYNGAP1 BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestCURE 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 FamiliesDonate to CURE SYNGAP1CURE SYNGAP1 BrochureCURE SYNGAP1 Fundraising Resource PageCURE SYNGAP1's State Ambassador ProgramWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingCURE SYNGAP1's Medical Considerations DocumentSYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordCitizen HealthClinical TrialsFrazier Eye StudyThe EMERALD TrialConnect with CURE SYNGAP1 (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokSYNGAP10 Weekly Video Podcast w/ MikeCURE SYNGAP1 Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [email protected]Music: In the Forest... by Lesfm from PixabayEpisode 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
Oct 22, 2025
46 min
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 StoryConnect with Kari:[email protected]'s SRF bioConnect with Jo:Andrew's Warrior Story[email protected]Jo's SRF bioFollow Jo on InstagramJo's personal blog pageEpisode Links:Combined Federal Campaign (CFC)Kari's speech at the 2025 SYNGAP1 GalaInformation about CHOP NHSInformation about Colorado NHS (CHCO)Register for the 2025 Cure SYNGAP1 Conference in AtlantaSRF & SYNGAP1 Info:Syngap Research Fund - https://cureSYNGAP1.org/What are SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesDonate to SRFSRF SYNGAP1 BrochureGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordCitizen HealthClinical TrialsFrazier Eye StudyThe EMERALD TrialMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSRF GrantsSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):LinkedInFacebookInstagramYouTubeX/TwitterTikTokSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [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
Sep 3, 2025
1 hr
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 Gala for SYNGAP1 – 2025Donate and TicketsCaren - oldest known person with SRDKathryn Helde - keynote speaker at GalaConnect with John:SRF BioFollow on LinkedIn (2nd account)Other Episode Links:Get Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramConnect with Rainy:[email protected]Rainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestSRF Event Links:Beacon of Hope: A Benefit for SYNGAP1Fourth Annual Scramble for SynGAP – 2025SRF CalendarSRF & SYNGAP1 Info:Syngap Research Fund - https://cureSYNGAP1.org/What is SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesRegister for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFSRF SYNGAP1 BrochureWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsySYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordCitizen HealthClinical TrialsFrazier Eye StudyThe EMERALD StudyMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSRF GrantsSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [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
Aug 4, 2025
28 min
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 StoryConnect with Nicole:Follow on FacebookNicole's "Dear Syngap" PostFollow on InstagramConnect with Rainy:[email protected]Rainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestEpisode Links:Citizen HealthFifth Annual SRF Gala for SYNGAP1 – 2025Beacon of Hope: A Benefit for SYNGAP1Fourth Annual Scramble for SynGAP – 2025SRF & SYNGAP1 Info:Syngap Research Fund - https://cureSYNGAP1.org/What is SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFSRF SYNGAP1 BrochureGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsySYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordClinical TrialsFrazier Eye StudyMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSRF GrantsSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [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
Jul 1, 2025
38 min
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 bioFollow Jo on InstagramJo's personal blog pageJo's SRF Blogs:We Were Searching for Syngap; We Just Didn’t Know ItMeet the Global Village of Syngap LeadersConnect with Rainy:[email protected]Rainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestEpisode Links:Splash For SyngapSRF Blog CollectionSRF Advocacy PageCalifornia's Self Determination ProgramTraveling with Special Needs BlogsEdSource articleCBS News articleNBC News articleSRF & SYNGAP1 Info:Syngap Research Fund - https://cureSYNGAP1.org/What is SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFSRF SYNGAP1 BrochureGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramWednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordClinical TrialsFrazier Eye StudyCitizen HealthMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSRF GrantsSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [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
Jun 5, 2025
1 hr 2 min
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 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 StoryPhoebe's Fight - Sprint4Syngap [email protected][email protected]Eric's SRF bioEmily's SRF bioConnect with Rainy:[email protected]Rainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028Rainy and Hope's Cross Country QuestSRF & SYNGAP1 Info:Syngap Research Fund - https://cureSYNGAP1.org/What is SYNGAP1-related disorders?How Many People Have SYNGAP1?SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFSRF SYNGAP1 BrochureGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramAdvocate for SYNGAP1Wednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, StanfordClinical TrialsFrazier Eye StudyCitizen HealthMore Links:Why Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSprint4Syngap 2025 (donation page and resource guide)SRF GrantsSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [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
Apr 8, 2025
40 min
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 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]'s SRF bioConnect with Rainy:[email protected]Rainy's SRF BioInstagram - @Hope4theCureYouTube - @Hope4theCureFacebook - Hope SelahMaySYNGAP1 Stories Episode 028SRF & SYNGAP1 Info:What is SYNGAP1-related disorders?Syngap Research Fund - https://cureSYNGAP1.org/SYNGAP1 Resources for Newly Diagnosed FamiliesPre-register for the 2025 Cure SYNGAP1 Conference in AtlantaDonate to SRFGet Involved with SRFVolunteer with SRFSRF Fundraising Resource PageSRF's State Ambassador ProgramAdvocate for SYNGAP1Wednesday WarriorsSupporting SYNGAP1 SiblingsSYNGAP1 & EpilepsyAddressing the Symptoms of SYNGAP1SYNGAP1 Studies and Trials:SYNGAP1 StudiesSYNGAP1 ProMMiS – Prospective Multidisciplinary, Multisite Study for Clinical ExcellenceClinical TrialsFrazier Eye StudyCitizen HealthMore Links:Heather Mefford, MD, PhDWhy Getting a Genetic Diagnosis MattersHow to Get Free Genetic TestingSpecial Needs TrustsSprint4Syngap 2025 (donation page and resource guide)SRF GrantsSRF Press ReleasesSRF's Medical Considerations DocumentConnect with SRF (@cureSYNGAP1):FacebookTwitterInstagramLinkedInTikTokYouTubeSYNGAP10 Weekly Video Podcast w/ MikeSynGAP Research Fund Apple Podcast ChannelFamily Zoom Meeting (bi-weekly on Wednesdays, 8PM ET): cureSYNGAP1.org/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417Comments: [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
Mar 18, 2025
47 min
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