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
Syngap Research Fund, 501(c)(3)
The SYNGAP1 Stories podcast is a heartfelt and poignant series that delves into the lives of individuals and families affected by SYNGAP1, a rare genetic disorder. Hosted by Ashley, this podcast provides a platform for guests to share their unique stories, offering insights, personal experiences, and emotional journeys.
One of the best aspects of The SYNGAP1 Stories podcast is how it brings forth a diverse range of guests with incredible stories to tell. Each episode presents an opportunity to learn about the struggles, triumphs, and challenges faced by individuals and their families dealing with SYNGAP1. Ashley's insightful questions and relevant personal experiences add depth and nuance to each story, creating a connection between listeners and guests.
The stories shared on this podcast are personal, touching, heartwarming, and heartbreaking all at once. They provide a deeper understanding of what it means to live with SYNGAP1 and offer a sense of community for those who may feel alone in their journey. The authentic nature of these conversations makes them relatable and encourages empathy among listeners. This podcast serves as a valuable resource for families impacted by SYNGAP1 to find solace in knowing they are not alone.
While it is hard to find any significant drawbacks to The SYNGAP1 Stories podcast, one aspect that could be improved upon is the frequency of episodes. As someone invested in the stories shared on this platform, it would be great to have more regular updates or releases. However, considering the time constraints faced by both host Ashley and her guests who have their own demanding schedules as caregivers, it is understandable that episodes may not be released as frequently as some might desire.
In conclusion, The SYNGAP1 Stories podcast is an important platform for raising awareness about SYNGAP1 while providing support and validation for those directly impacted by the disorder. Ashley's compassionate hosting style creates an atmosphere where guests feel comfortable sharing their journeys, ultimately fostering a sense of community among listeners. This podcast is a must-listen for anyone wanting to learn more about SYNGAP1 and gain insight into the lives of those affected by it.
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, seizures, behavioral issues, and how her family's SYNGAP1 life impacts Jack's older sibling, Ava. All episodes are available at Syngap.Fund/Stories. Jack's Warrior Story Connect with Stacey stacey@cureSYNGAP1.org Stacey's SRF bio Connect with Rainy: rainy@cureSYNGAP1.org Rainy's SRF Bio Instagram - @Hope4theCure YouTube - @Hope4theCure Facebook - Hope SelahMay SYNGAP1 Stories Episode 028 SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://curesyngap1.org/ SYNGAP1 Resources for Newly Diagnosed Families Donate to SRF Get Involved with SRF SRF's State Ambassador Program Wednesday Warriors Supporting SYNGAP1 Siblings SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Details for SYNGAP1 Conference 2024 Addressing the Symptoms of SYNGAP1 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 (Weekly on Wednesdays, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 029 SYNGAP1 Stories, November 19, 2024 #SYNGAP1StoriesJack #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp29 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication
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 incredibly difficult medical journey, what makes Hope happiest, an EEG with Curious George, and the wonderful connections they are making along the way! This is a fundraiser, so please check out Syngap.Fund/Hope4theCure! All episodes are available at Syngap.Fund/Stories. Hope's Warrior Story My SYNGAP1 Drive-a-thon, Hope4theCure Connect with Rainy & Hope: Instagram - @Hope4theCure YouTube - @Hope4theCure Facebook - Hope SelahMay Other Links Cannonball for the Cure Connect with Ashley: afrye@curesyngap1.org Ashley's SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://curesyngap1.org/ SYNGAP1 Resources for Newly Diagnosed Families Wednesday Warriors Supporting SYNGAP1 Siblings Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts SYNGAP1 Family Day 2023 – A Beacon of Hope! (blog with videos) Pre-register for SYNGAP1 Conference 2024 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 (Weekly on Wednesdays, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 028 SYNGAP1 Stories, April 11, 2024 #SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon
Show Notes In 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, behavioral issues, Jadyne's optimism, and advocating for your children! This episode will educate everyone in the rare disease world. Behavior is communication - listen for details! See all episodes at Syngap.Fund/Stories. Jadyne's Warrior Story Connect with Jackie: jackie@curesyngap1.org Jackie's SRF bio LinkedIn Other Links SRF SYNGAP1 Resources for Education & Advocacy SYNGAP1: Background, Development, and the Impact on Children Information on ABA - Applied Behavior Analysis - Link 1; Link 2 Severe Behaviors and Advocacy, SRF Webinar #53 by Jackie Exploring Advocacy: Finding and Refining Your Voice - webinar hosted by Jackie Jackie has misc. links news, media, etc. here Connect with Ashley: afrye@curesyngap1.org Ashley's SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye Connect with Jessica: jjohnson@curesyngap1.org Kai's Warrior Story SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://curesyngap1.org/ SYNGAP1 Resources for Newly Diagnosed Families Wednesday Warriors Supporting SYNGAP1 Siblings Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts SYNGAP1 Family Day 2023 – A Beacon of Hope! (blog with videos) Pre-register for SYNGAP1 Conference 2024 Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Family Zoom Meeting (Weekly on Wednesdays, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 027 SYNGAP1 Stories, March 3, 2024 #SYNGAP1StoriesJadyne #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp27 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #BehaviorIsCommunication
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 hosted by SRF. This episode not only includes that speech, but Ashley talks candidly to Paulina to expand upon her life with twin Syngapians. See all episodes at Syngap.Fund/Stories. Warrior Story for Libby & Espy Connect with Paulina: Instagram Facebook Blog Posts Written by Paulina: SRF – Our Voice is Getting Louder for SYNGAP1! SYNGAP1 Family Day 2023 – A Beacon of Hope! Other Links: SRF Siblings Page Fondo de Investigación Syngap Recursos en español Café Syngap1 Podcast Connect with Ashley: afrye@curesyngap1.org SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://curesyngap1.org/ SYNGAP1 Resources for Newly Diagnosed Families Supporting SYNGAP1 Siblings Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Pre-register for SYNGAP1 Conference 2024 Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Family Zoom Meeting (Weekly on Wednesdays, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 026 SYNGAP1 Stories, February 13, 2024 #SYNGAP1StoriesLibby #SYNGAP1StoriesEspy #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp26 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #WinnieThePooh
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 discuss iPads, music & guitars, finding your community, and more. See all episodes at Syngap.Fund/Stories. Kai's Warrior Story Connect with Jess: Instagram Instagram (Kai's account) Connect with Ashley: afrye@curesyngap1.org SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://curesyngap1.org/ SYNGAP1 Resources for Newly Diagnosed Families Supporting SYNGAP1 Siblings Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Pre-register for SYNGAP1 Conference 2024 Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Family Zoom Meeting (Weekly on Wednesdays, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 025 SYNGAP1 Stories, January 30, 2024 #SYNGAP1StoriesKai #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp25 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Music #Guitars #SyngapConf #Advice #RareAdvice #SYNGAP1Siblings #Positivity
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 movies, genetic testing, severe behaviors, his super sibling Kallen, and more. See all episodes at Syngap.Fund/Stories. Brycen's Warrior Story Connect with Hillary: Facebook Instagram Other Episode Links: Fragile X Helen DeVos Children's Hospital Intensive Feeding Clinic Connect with Ashley: afrye@curesyngap1.org SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://curesyngap1.org/ SYNGAP1 Resources for Newly Diagnosed Families Supporting SYNGAP1 Siblings Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Pre-register for SYNGAP1 Conference 2024 Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Family Zoom Meeting (Weekly on Wednesdays, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 024 SYNGAP1 Stories, January 9, 2024 #SYNGAP1StoriesBrycen #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp24 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #Advice #RareAdvice #DisneyMovies #FragileX #SYNGAP1Siblings #ABATherapy
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 times you hear it, and this episode has a lot of advice that relates to all in the Rare Disease Community. We hope you enjoy, and if you've missed any episodes, you can see them all at Syngap.Fund/Stories. Please help us on Giving Tuesday so that we can continue our effort to find a cure for all who are living with SYNGAP1 - donate at https://Syngap.Fund/GT23 Follow Ashley Frye: afrye@curesyngap1.org SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 023 SYNGAP1 Stories, November 28, 2023 #SYNGAP1StoriesAshley #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp23 #Nathan #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #Advice #RareAdvice #SRFGivingTuesday #GivingTuesday
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. While Ashley focuses on each episode's guest and their stories, she also shares anecdotes, opinions, and advice of her own, and we share snippets from the first 21 episodes here. We hope you enjoy, and if you've missed any episodes, you can see them all at Syngap.Fund/Stories. And…remember to send Ashley a belated Happy Birthday message: afrye@curesyngap1.org Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 022 SYNGAP1 Stories, November 14, 2023 #SYNGAP1StoriesAshley #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp22 #Nathan #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #HappyBirthday
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 to our sponsors, including our Gold-level sponsors, Stoke Therapeutics / Acadia Pharmaceuticals! Book your rooms here Order T-shirts here Friday night Caregiver Dinner tickets here Lauren Perry - SRF Bio Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 021 SYNGAP1 Stories, October 31, 2023 #SYNGAP1StoriesConf #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp21 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #SyngapConf #Orlando
Show Notes: Nancy Kessler is an SRF BOD member, an active volunteer & advocate, and has hosted the SRF Gala honoring her sister Caren Leib for three years, including coming up on October 21, 2023. Caren is the oldest known person diagnosed with SYNGAP1. It is impossible to do justice to her 67 years on this planet, but luckily, Caren starred in her own movie, and Nancy has shared numerous other stories about her sister's life. We hope you enjoy this unique episode, then check out the links below to learn even more about this family that is so special to the SynGAP Research Fund community. Nancy's SRF Bio Caren's Warrior Story Celebrating Caren - 15-minute movie; 2-minute trailer; press release; Video of event held to launch Celebrating Caren Meeting Caren--Interview with SRF's Jess Duggan Blog post (Jess's SRF Bio) SRF Gala honoring Caren Leib - 2023 webpage; 2022 videos #1 & #2; 2021 summary; Happy 65th Birthday Caren! - Blog Post Follow Nancy: Instagram LinkedIn Facebook Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 020 SYNGAP1 Stories, October 17, 2023 #SYNGAP1StoriesCaren #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp20 #Caren #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #CelebratingCaren #Gala
Show Notes: Julie Miles is an SRF Board Member, Volunteer, and organizes the upcoming event ‘Scramble for SynGAP' in Traveler's Rest, SC. Miller, the eldest of her three children with husband Michael, is 8 years old and was diagnosed with SYNGAP1 on July 28, 2020. Ashley talks with Julie about developmental delays, genetic testing, a devastating diagnosis, concerns over self-blame, and the joys of watching Miller enjoy music, baseball, spelling, books, and, of course, swimming! Julie's SRF Bio WSPA-7 News Video Scramble for SynGAP Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SynGAP Research Fund Apple Podcast Channel SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 019 SYNGAP1 Stories, October 3, 2023 #SYNGAP1StoriesMiller #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp19 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Scramble #ScrambleForSyngap #TheCall #Music #Swimming #Baseball #Spelling #Golf #Patience
Sydney & Brett Stelmaszek are heavily involved in the SRF community. Sydney is on the BOD, is a patient advocate, and coordinates our connection with Children's Hospital of Philadelphia (CHOP). Brett is the driving force behind Cannonball for the Cure (CFTC), an annual fundraiser where SYNGAP1 parents drive cross country live-streaming the entire journey to raise awareness of SYNGAP1. This episode touches on their involvement with SRF as well as raising their son Emmitt, diagnosed with SYNGAP1 while living in South Africa. Their story of excessive seizures, aggression, hope, and love while caring for Emmitt and his two brothers is at times heart-breaking, but always heartwarming. Emmitt's Warrior Story Eating with Emmitt - Blog Post Flying & Seizing from Africa to Florida - Emmitt's Story Sydney's SRF Bio Follow Sydney & Brett: Instagram - @UFD_Tech Twitter - @SydneyStel & @UFDTech Facebook - Sydney YouTube - @UFDTech YouTube - Our Syngap Journey More links: Cannonball for the Cure Natural History Study at CHOP SPECIAL WEBINAR: $25M Gift to ENDD for SYNGAP1 and STXBP1 MDBR - Blog Post by Sydney Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 018 SYNGAP1 Stories, September 19, 2023 #SYNGAP1StoriesEmmitt #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp18 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Cannonball #CFTC #UFD
Show Notes Victoria Arteaga is the Director of Fondo de Investigación SYNGAP & SYNGAP1 Mom to Amelia. She works endlessly to help the SYNGAP1 community in Latin America & across the globe, attending and presenting at multiple conferences annually. Vicky discusses Amelia's progress, the joy she brings to the family, a new service dog, SRF's latest podcast Café SYNGAP1 in Spanish, and the upcoming Second SYNGAP1 Scientific Conference, also in Spanish. Amelia's Warrior Story & Instagram Post Vicky's Bio Follow Vicky: Instagram - @vickyart78 Instagram Fondo - @syngapamericalatina Twitter - @VickyAArteaga More links: Gomez Family Video (Spanish w/ English subtitles) Brain & Life Interview - Spanish & English Café SYNGAP1 Segundo Congreso Científico Syngap1 en Español Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 017 SYNGAP1 Stories, September 12, 2023 #SYNGAP1StoriesAmelia #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp017 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #ServiceDog
Show Notes Going back to school is difficult for most kids and their families, but for those living with SYNGAP1 and other rare diseases, it is especially hard! Mike Graglia, SRF Co-Founder & Managing Director and Dad to Syngapian Tony, joins Ashley again to talk about a crisis his family experienced on Tony's first day at a new school. It's easy to talk about the joy we experience with our special kids, but it can be gut-wrenching to discuss (and hear about) the hard days. That makes it so important to share these stories - to make sure our community and those around us can prepare for these possibilities to the best of our abilities. Please, if you have a story to share, email us at ed@curesyngap1.org. Thank you for listening! Tony's Warrior Story Mike Graglia's Bio Mike & Ashley's Story SYNGAP1 Stories Episode 002 - Mike Graglia More links: Jackie Kancir's Bio Webinar - Severe Behaviors & Advocacy (with Jackie Kancir) Blog Post - Stella Stays In School: Getting Educational Needs Met Blog Post - A Message To The Newly Diagnosed SynGAP-1 Parent Webinar - Your teenager was just diagnosed with SYNGAP1, processing through a new lens Syngap Soirée Ashley's Soirée Video Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 016 SYNGAP1 Stories, August 30, 2023 #SYNGAP1StoriesTony #SynGAP #SYNGAP1 #SYNGAP1Stories #SYNGAP1Stories16 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Keto #School #FirstDayOfSchool #NewSchool
Show Notes Samar Katnani, SRF Volunteer and Mom to 3-year-old Syngapian Reema, talks honestly about medications, sharing your story, self-help, anxiety associated with caring for Reema, fake crying, & much more. As with all SYNGAP1 Stories, this one gets very personal, and will benefit all of us, especially others caring for someone with a rare disease. Thank you for listening! Reema's Warrior Story More links: My Reema Epilepsy Awareness Day is Every Day for Us Now Augmentative and Alternative Communication (AAC) device Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 015 SYNGAP1 Stories, August 22, 2023 #SYNGAP1StoriesReema #MyReema #Syngap #SYNGAP1 #SYNGAP1Stories #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Keto #Grandparents #SelfCare
Show Notes: Suzanne Jones, SRF BOD chair & SYNGAP1 Mom, chats with Ashley about the upcoming Syngap Soirée fundraiser in Atlanta, caregivers, eating out (or not!), Jansen's behavioral issues as well as her recent speech improvements, and advice to parents to modify their expectations when receiving a rare disease diagnosis. Connect with Suzanne SRF BIO Facebook Instagram LinkedIn Jansen's Warrior Story Jansen's Journey More links: Syngap Soirée, Sparks of Hope - Atlanta, GA, August 26, 2023 Soirée - Instagram Soirée - LinkedIn Fundraising Article on Jansen in Variantyx TV Interview of Jones Family by 11 Alive, Atlanta Follow Ashley Frye: SRF Bio LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund - https://syngapresearchfund.org Donate - https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Registration Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 014 SYNGAP1 Stories, August 8, 2023 #SYNGAP1StoriesJansen #Syngap #SYNGAP1 #SYNGAP1Stories #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Fundraising #Horses #HorseRiding #Caregivers
Show Notes: Ashley and SYNGAP1 Mom Stefanie Decker chat about 5-year-old Saydee. Diagnosed in 2020, Saydee loves water, is a local “celebrity”, and has “the best smile'! Listen to their SYNGAP1 journey and how they handle the ups and downs of living with a rare disease. Stefanie's SRF BIO Saydee's Warrior Story More links: 2022 Caregiver Connect - blog written by Stefanie CHOP Natural History Study Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SYNGAP1 Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Registration SRF Newsletter Special 5th Birthday Issue 6/27/23 Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 013 SYNGAP1 Stories, July 25, 2023 #SYNGAP1StoriesSaydee #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #genetictesting #therapy #family #water #sisters #siblings #bestsmile
Show Notes: In this very candid episode, SYNGAP1 Mom Monica Harding opens up to Ashley about her 17-year-old son Jaxon. She describes his first seizures, aggression, going to church, the impact of COVID changing his schedule, and how it affected the entire family. This is an important glimpse into the struggles and joys a strong family living with SYNGAP1 faces. Monica's SRF bio Jaxon's Warrior Story More links: Jayden's Juice Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SYNGAP1 Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations SRF Newsletter Special 5th Birthday Issue 6/27/23 Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 012 SYNGAP1 Stories, July 11, 2023 #SYNGAP1StoriesJaxon #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #genetictesting #therapy #family #militaryfamily
Show Notes: In Episode 11, our host, Ashley, chats with SRF Co-Founder and SYNGAP1 Mom Ashley Evans to celebrate SRF's 5th birthday! They talk about starting SRF, progress made during the past five years, the dedicated community of SRF volunteers, hope for the future, moving, and, of course, Syngapian Tony and his now 5-year-old brother John. Ashley's SRF bio Tony's Warrior Story More links: Interview with Kayo Conferences SRF Introductory Video A Message to the Newly Diagnosed SynGAP-1 Parent Meet the Global Village of Syngap Leaders SRF Newsletter Special 5th Birthday Issue 6/27/23 Pathways to a Cure for SYNGAP1 Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SYNGAP1 Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 011 SYNGAP1 Stories, June 27, 2023 #SYNGAP1StoriesTony #Syngap #SYNGAP1 #SYNGAP1Stories #siblings #SYNGAP1siblings #founder #rarediseasesiblings #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology #yoga
Show Notes: Episode 10 comes from "down under" as Ashley talks with Danielle Williams, Mom to two daughters, now 13 & 11 years old, each with the same de novo SYNGAP1 mutation. They talk about the heartbreaks of two diagnoses, living with no sleep, connecting to the community, advice to newly diagnosed families, and the joys of cuddling with a teenager. Jaeli & Dali's Story Williams Family Story Raising Awareness in the Early Days Follow Danielle: LinkedIn Danielle's Business Website Additional Reading - Five Things Parents Need to Know Danielle Co-Founded the Following Organizations: Syngap Research Fund Australia - Facebook Page Syngap Global Network Genetic Epilepsy Team Australia Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SYNGAP1 Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 010 SYNGAP1 Stories, June 13, 2023 #SYNGAP1SoriesJaeli #SYNGAP1StoriesDali #Syngap #SYNGAP1 #SYNGAP1Stories #siblings #SYNGAP1siblings #rarediseasesiblings #epilepsy #epilepsyawareness #autism #autismawareness #intellectualdisability #id #anxiety #raredisease #rarediseaseresearch #SynGAPResearchFund #careaboutrare #advocacy #patientadvocacy #neurology
Show Notes: In Episode 9, Ashley talks with SYNGAP1 Mom & SRF Operations Mgr. Lauren Perry. These two talk about Lauren's 2 teenage sons, including Will, diagnosed in 2016, seizures, and Will's recent successful VNS replacement surgery. They also chat about his typical day, markers, and pride in the SRF community. Will's Warrior Story VNS Therapy Follow Lauren: Twitter Email: lauren@curesyngap1.org Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SYNGAP1 Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 009 SYNGAP1 Stories, May 30, 2023 #SYNGAP1storiesWill #Syngap #SYNGAP1 #SYNGAP1Stories #VNStherapy #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: In Episode 8, Ashley talks with SYNGAP1 Mom Heather Bensch, whose daughter McKaela was diagnosed in her 20s. Heather talks about her struggles getting a diagnosis as well as the joys of raising McKaela. Heather is a certified life coach working with and advocating for the special needs community. McKaela's Warrior Story McKaela's Spark for Autism Story McKaela's Facebook Blog A Sister's Promise - a post to McKaela from her sister Plum Follow Heather: Facebook Instagram Twitter TikTok Pinterest Heather's Business (Except Defeat Life Coaching) Links: Email: exceptdefeatlifecoaching@gmail.com Phone: 731/612-8083 Website Facebook Grief and Resilience with our SRF Patient Advocacy Group, co-written by Heather Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SYNGAP1 Stories Episode 001 - Ashley Frye SYNGAP1 Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@curesyngap1.org Music: In the Forest... by Lesfm from Pixabay Episode 008 SYNGAP1 Stories, May 16, 2023 #SYNGAP1StoriesMcKaela #Syngap #SYNGAP1 #SYNGAP1Stories #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: In episode 7, SYNGAP1 Dad Peter Halliburton joins Ashley to discuss volunteering with SRF in the "early days" compared to now, receiving his son Carter's diagnosis, dealing with seizures, changing doorknobs, and appreciating the joys in Carter's daily life. Carter's Warrior Story Follow Peter Halliburton: Instagram Twitter LinkedIn Contact Peter at peter@curesyngap1.org. More about the Halliburton Family: Halliburton Family Video Cook Children's Hospital Article Blog by Peter - 8 Months on the Rollercoaster of - Mostly - Uncontrolled Epilepsy Blog by Peter - What Do You Mean, "Cure SYNGAP1" Cannonball For A Cure Follow Ashley Frye: LinkedIn Facebook Instagram Nathan's Warrior Story SynGAP Stories Episode 001 - Ashley Frye SynGAP Stories Episode 005 - Panda Panda's News Story: Nathan's Dog SRF & SYNGAP1 Info: What is SYNGAP1? Syngap Research Fund Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 007 SynGAP Stories, May 2, 2023 #SyngapStoriesCarter #Volunteer #SRFVolunteer #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: In episode 6, we turn the tables on our host. Ashley talks about volunteering for SynGAP Research Fund, organizing the SYNGAP1 Conference 2023 hosted by SRF, and the first SynGAP Paddle Slap coming up on May 6 in Oxford, MS. SYNGAP1 Conference 2023, hosted by SRF - Hotel Reservations SynGAP Paddle Slap - https://Syngap.Fund/Paddle23 USA Pickleball The Oxford Park Commission The Farmstead, Oxford, MS Live Band - Rocket 88 Bounce Castles donated by Blue Line Inflatables Follow Ashley Frye: Facebook LinkedIn Instagram Nathan's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan SynGAP Stories Episode 001 - Ashley Frye SynGAP Stories Episode 005 - Panda Panda's News Story: Nathan's Dog Cannonball For A Cure What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 006 SynGAP Stories, April 18, 2023 #SyngapStoriesPaddleSlap #SRFConference #Pickleball #Volunteer #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: In Episode 5, Ashley talks with Cecilia Anastos, Founder and Lead Trainer of Meridus K9 & Equine LLC, providing service and emotional support dogs among other services. Panda was recently placed with the Frye family to be Ashley's son Nathan's service dog. In this episode, Cecilia answers the questions, “Can a service dog replace a human?”, “What are the most important things service dogs do?” and “Can service dogs save a child's life?” Reach Cecilia at: cecilia@meridusk9.com Website: www.meridusk9.com LinkedIn: http://www.linkedin.com/in/ceciliaanastos Previous SRF Webinars: Webinar #52 and Webinar #65 Panda's News Story: Nathan's Dog What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike Follow Ashley Frye: Facebook LinkedIn Instagram Nathan's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 005 SynGAP Stories, April 4, 2023 #SyngapStoriesPANDA #SyngapStoriesServiceDogs #ServiceDogs #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: In Episode 4, Ashley talks with SYNGAP1 Mom Kali Worth. Kali talks about missing milestones, epilepsy, genetic testing, expanding your community as a rare parent as well as the joys Kailyn (Kai) brings to her life. Kai's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/kai Read Kali's SRF bio, blogs and a video of Kai's story here. Follow Kali on Twitter: https://twitter.com/WorthKali What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike Follow Ashley Frye: Facebook LinkedIn Instagram Nathan's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 004 SynGAP Stories, March 21, 2023 #SyngapStoriesKAILYN #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: In Episode 3, Ashley talks with SYNGAP1 Mom Corey Baysden. Corey talks about the joys of raising Saylor as well dealing with a difficult diagnosis and finding a community in SRF. As SRF Community Activation Leader, Corey communicates with and advocates for many newly diagnosed families. You can reach her at corey@syngapresearchfund.org. Saylor's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/saylor Follow Corey Baysden: Facebook LinkedIn Instagram Twitter What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Donate: https://Syngap.Fund/Donate SYNGAP1 & Epilepsy Why Getting a Genetic Diagnosis Matters How to Get Free Genetic Testing Special Needs Trusts Connect with SRF (@curesyngap1): Facebook Twitter Instagram LinkedIn TikTok SYNGAP10 Weekly Video Podcast w/ Mike Follow Ashley Frye: Facebook LinkedIn Instagram Nathan's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 003 SynGAP Stories, March 7, 2023 #Syngap #SYNGAP1 #epilepsy #autism #raredisease
Show Notes: Ashley talks with SRF Co-founder and Syngap Dad Mike Graglia. Mike talks about founding SRF with his wife, Ashley Evans & raising a Syngapian child. He offers his best advice to new SYNGAP1 parents. What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Donate: https://www.syngapresearchfund.org/donate/donate#googtrans(en|en) Mike Graglia: https://www.syngapresearchfund.org/team/mike-graglia Ashley Evans: https://www.syngapresearchfund.org/team/ashley-evans-mphil-mba-co-founder Mike & Ashley's Story: https://youtu.be/lLO2hsAi4-M & feature in Newsweek: https://www.newsweek.com/my-son-syngap1-rare-genetic-condition-1776362 Tony's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/tony Number Blocks: https://www.netflix.com/title/81272431 Connect with SRF: Facebook: https://www.facebook.com/cureSYNGAP1 Twitter: https://twitter.com/intent/user?screen_name=cureSYNGAP1 Instagram: https://www.instagram.com/curesyngap1/ LinkedIn: https://www.linkedin.com/company/curesyngap1/ TikTok: https://www.tiktok.com/@curesyngap1 SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR Follow Ashley Frye: Facebook: https://www.facebook.com/ashley.hewettfrye LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/ Instagram: https://www.instagram.com/fryemom/ Nathan's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan Wednesday SRF Family Zoom Meeting: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 002 SynGAP Stories, February 21, 2023 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Show Notes: Host Ashley Frye discusses her family's journey to a SYNGAP1 diagnosis for her son Nathan and living with and caring for a young child with a rare disease. What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Follow Ashley: Facebook: https://www.facebook.com/ashley.hewettfrye LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/ Nathan's Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan Connect with SRF: Facebook: https://www.facebook.com/cureSYNGAP1 Twitter: https://twitter.com/intent/user?screen_name=cureSYNGAP1 Instagram: https://www.instagram.com/curesyngap1/ LinkedIn: https://www.linkedin.com/company/18940628/admin/ TikTok: https://www.tiktok.com/@curesyngap1 SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR Cannonball For A Cure: https://www.syngapresearchfund.org/post/pr-12-ufd-tech-hosts-second-annual-cannonball-for-the-cure-charity-stream-to-benefit-syngap-research-fund Wednesday Zoom Meeting for Syngap Families: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments and suggestions: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 001 SynGAP Stories, February 7, 2023 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
Welcome to Syngap Stories, a podcast dedicated to stories from the Syngap community about living with a rare, untreatable genetic disorder. What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1 Syngap Research Fund: https://www.syngapresearchfund.org/ Follow Ashley: Facebook: https://www.facebook.com/ashley.hewettfrye LinkedIn: https://www.linkedin.com/in/ashley-frye-62095582/ Connect with SRF: Facebook: https://www.facebook.com/cureSYNGAP1 Twitter: https://twitter.com/intent/user?screen_name=cureSYNGAP1 Instagram: https://www.instagram.com/curesyngap1/ LinkedIn: https://www.linkedin.com/company/18940628/admin/ TikTok: https://www.tiktok.com/@curesyngap1 SYNGAP10 Weekly Video Podcast with Mike: https://www.youtube.com/playlist?list=PLjpr3a14_ls38mAeOZeErFpEjbrw5mGhR Wednesday Zoom Meeting for Syngap Families: Syngap.Fund/SRFfam Meeting ID - 972 0059 2178 Passcode - 848417 Comments and suggestions: ed@syngapresearchfund.org Music: In the Forest... by Lesfm from Pixabay Episode 000 SynGAP Stories, January 22, 2023 #Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
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