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Listen Show PodCast
USA Today, Synchrony Conf, #EEC2026, Portugal & Family Resources — #CureSYNGAP1 in Action #S10E218
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#Angelman ASO Fails, #AlexanderDisease ASO Wins: #SYNGAP1 CAMP4 ASO? NYT on Clinical Trials #S10E217
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Big Week for #SYNGAP1: Trials, Data, #Epilepsy, Palo Alto & Athens #S10E216
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#AdamsCamp & Tony in Denver: Support, Progress & Open Issues, taking a break from #LakeMary #S10e215
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Go Ada & Ford. Fundraise now. #CTRPoll Do it now. Porter’s Sib Story. ORCA Study soon! #S10e214
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CAMP4 Trial Approved in Australia & Argentina, Connect for news, Ada & Ford Fund a grant, #S10e213
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#Future4Ford. 2Q26 #SYNGAP1Census = 1,806 Patients (+45) $CAMP #ValproateDemandBetter #S10e212
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We need a #SYNGAP1 mouse lab? #BIO2026 #MDBR 19 days for Merch. #GeneticTesting #ASOwebinar #S10e211
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#ILoveSomeoneWithSYNGAP1. June 21 is SYNGAP1 Awareness day. $159 rooms at the GrandHyatt! #S10e210
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#NightOfImpact a huge success & we are lucky to have Dr. Helen R Willsey. #S10e209
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Tony update. #ThisIsOursToLose. More great results from $CAMP4. #NightOfImpact in 9 days! #S10e208
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Earnings reports: CAMP4 files. Stoke optimizing. Praxis on track. 2026 Video! #S10e207
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Longitudinal Data Matters! Prioritized list of studies! #Sprint4SynGAP a great success! #S10e206
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Comment on Haystack Petition to FDA. New Board of Trustees. #ICD10 F78.A1 #CureID #S10e205
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Global Advocacy. #NL51. Snippets! #SYNGAPcensus = 1,761. UT Arlington & Cook Children’s. #S10e204
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DSC-III and Data - CURE SYNGAP1 is working tirelessly to increase SYNGAP1 Knowledge #S10e203
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It is time to get ready for clinical trials, this is how. #S10e202
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We need to raise funds for the critical work of CURE SYNGAP1, join us with #Sprint4SYNGAP #S10e201
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#RareDiseaseWeek! We are doing much beyond grants… too much. Get the Citizen Health App! #S10e200
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Support Clinical Trial Design for #SYNGAP1 via biobanks, EEGs and Fundraising. #S10e199
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All #SYNGAP1 Families need to take part in our Natural History Studies: ProMMiS & Citizen #S10e198
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Funding Priorities. Biorepository. Genetic Testing. How to move for a clinical trail! #S10e197 Monday, February 2, 2026 - Week 6
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Stoke Tx shows us that ASO Clinical Development is accelerating. #S10e196
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SYNGAP1 Related Disorder (SRD) Key Talking Points & why we need to use them. #S10e195
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Becky Quick launches CNBC Cures, Finding Your Voice & Key Talking Points for SRD! #S10e194
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Stockdale Paradox: Not getting out at Xmas, but we will win. #SynGAPCensus = 1,707. #S10e193
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AES ‘25 was incredible, Fundraising, PRV, Behaviors, Posters/Pubmed & Thank you. #S10e192
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New book by #SYNGAP1 mom for and about #GlassChild (Sibling of Special Needs) #S10e191
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AAV. Resources on cureSYNGAP1.org. Congrats to Ultragenyx & Novartis. Conf is in 5 days! #S10e190
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#CureSYNGAP1 Conf: 1 week! #GivingTuesday: 5 days. #ProMMiS. Mvmt & Sleep papers. #S10e189
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It’s time to UNLOCK THEIR TOMORROW - let’s raise funds. Also: CAMP4 and our name. #S10e188
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Clinical Research, AI Dx, #NL47, Survey, #Autism Press, 6 Days to Register for #SYNGAP1conf #S10e187
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#SyngapCenus 1,675 Teacher Handout CC/VNS Citizen Paper $CAMP starts GLP Tox CIRM funds S1 #S10e186
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F78.A1,the code for #SYNGAP1, turns 4, make sure we use it. #ICD10 for #RareDisease Update. #S10e185
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DSC - RDCRN - NCATS - NIH Press! #AAV in #Cell. SRF at CB. Scramble for SYNGAP1 next week! #S10e184
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You need a #CRID. SRF $1M to $CAMP noticed in Equity Research! #BeaconOfHope was great. #S10e183
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CURE SYNGAP1 joins biotech investors in CAMP4 Tx’s $100M Raise for ASO Program $CAMP #S10e182
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Why & How Do Patient Advocacy Groups Matter? Party Friday! #SYNGAP1Conf soon! #Elopement #S10e181
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#IEP: Syngapians don’t like the heat 🌡️ #BeaconOfHope #IEC2025 #CitizenHealth #DSC #CFC #S10e180
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GALA is now, #StokedAboutStoke, Go Grann, Our Villages, CHOP/NIH, More on Elopement. #S10e179
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How to talk about #ELOPEMENT in #SYNGAP1 with Schools, Judges & Police Officers. #S10e178 Monday, August 18th, 2025. Week 34.
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Embracing Complexity, Another Pipeline Neuren Pharma, It’s Party Time #S10e177
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Why join the Relutrigine study from Praxis for DEEs with motor seizures? - #S10e176
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Global Overview of SYNGAP1 Natural History Studies - Support the SYNGAP1 #ProMMiS – #S10e175
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CENSUS, SYNGAP1. It is racing to a better future b/c of our families. #S10e174
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TOMORROW 6/21 IS SYNGAP1 AWARENESS DAY #ILOVESOMEONEWITHSYNGAP1 #S10e173 Friday June 20, 2025. Week 25
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CAMP4, JAX and Allen present about ASCGT, JHU Article, CRISPR, Repurposing, 4PB & SRF News #S10e172
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ADULT 🇵🇹 🇫🇷 🇪🇸 🇳🇱 🇬🇧 🇨🇦 caregivers PLEASE complete Andrade Study ASAP. #S10e171
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#S10e170 - Sprint is tomorrow! WODC Update. ASOs are coming… Get ready.
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ProMMiS Data Webinar up! New Board Sprint4SynGAP @ $168K! Catatonia ASO?s Siblings Missense #S10e169
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Time to Lean In FEROCIOUSLY on Clinical Trial Readiness–Frazier CHOP/CHCO will you say Yes? #S10e168
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Global CTR Survey, Two New PRs, Sprint4Syngap Hype & Community Voices - #S10e167
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SYNGAP1 #UnMetNeed bucketed by Medical, Behavior/ID & Impact on Family - #S10e166
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Save Medicaid: A Critical Moment for Our Loved Ones
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Tell me your UnMet Need. CHCO ProMMiS! Gut Paper with Citizen Health. Rx Repurposing - #S10e164
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RDD25 - Federal Funding - Hope vs Despair? Disability is Political. Take it or Advocate? #S10e163
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We are on the Hill Advocating for a better future – Sprint, DREEM, Travel & NET - #S10e162
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Impact Report is out! Read the Stanford Knowles article. Sign up for Dreem. - #S10e161
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Don’t give up on your SYNGAPian at any age, Go Aaron! and advocacy matters - #S10e160
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Study Spotlight: Rochester 3 Needs Toddlers, Minovacca's Neuro Focus, & Key Research Updates - #S10e159
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SRF Roadmap Paper is published. Read and share with family and supporters. - #S10e158 Wednesday, January 15, 2025
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2025 is the year we double down on SYNGAP1. Tune in now. - #S10e157
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AES & SYNGAP1 Conf were great for SynGAP. 2 wks left to raise funds in ‘24 - #S10e156
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Annie - #S10e155
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Cure SYNGAP1 is firing on all cylinders! 4MTx, C2C and the Conference is almost here! #S10e154
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Progress in Studies, Trials & Community Milestones; Conference #S10e153
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The Coast 2 Coast Challenge benefiting the SYNGAP1 #ProMMiS for Clinical Excellence is critical. #S10e152
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Nancy Leib Kessler is exceptional: Fundraising, Sibling, Advocating. Do Frazier and come to #SRFConf, #S10e151
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UFDTech, Eye-tracking, Praxis #DEEpDive, Stoke, Lacoste, Devinsky, #SRFConf, #S10e150
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Join Frazier Study, Combined Federal Campaign (33321), Unravel Study, new papers & Chronic Grief #S10e149
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Back2School, Unravel Bio, Support Gala & Scramble, Prez Search, Fondo & more great news #S10e148
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#SRFadvocates, #ColinFarrellFoundation, Adult Advocacy & the Best Science Team Ever #S10e147
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Zempleni, #SYNGAPconf, #ProjectACE, #ACENHS, Newsletter, #S10e146
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A tale of three grants… Coba Grant, Quadrato Grant & Anderson Paper! #S10e145
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1,454! Including Hope. Keto, Heat, Sleep Study, Colorado, California, CIRM & Longboard! #S10e144
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Why is SYNGAP1 so under diagnosed? A reminder. #SRFConf Reg is open! So Many Leaders! #S10e143
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NHS in Colorado! Real talk about new therapies. Planning for RAA & the Conf! #S10e142
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SRF LT Webinar, MDBR, Therapies, Learning at Conferences. #S10e141
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Who will fight for our kids when we aren’t there? SRF and your crew. #S10e140
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SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139
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Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138
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Stoke Praxis Longboard, CHOP & Adult Studies, Hope4theCure, Sprint4Syngap, & Social Matters #S10e137
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SYNGAP1 Ciitizen Paper is out! UCB Survey. UCSF is discovering SYNGAP. #Sprint4SYNGAP 2024 is on! Fitter at the WH. #S10e136
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#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135
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A very important questionnaire. Repurposing update & ethics. Grant shaping in progress! #S10e134
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What is this SYNGAP1 illness / disease / syndrome / NDD / DEE / MRD5 / NSID actually called? #S10e133
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Congratulations to Encoded, Jaguar, Aparito and what will we count? How will we know these therapies are working? #S10e132
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SYNGAP1 is complex, we need to partner with our clinicians to improve care & get ready for repurposing. #S10e131
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2024 is off to a GREAT start. Time to get clinical, let’s get all these studies oversubscribed and make sure industry knows we are ready. #S10e130
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Happy New Year! Happy 10th Birthday Tony! Congrats #Longboard. Publication update. Good feedback and frustrating stories. #S10e129
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Over the break: Studies to do, Research & Press to read, Funds to raise, Resources to update, Resolve to Volunteer #S10e128
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Ciitizen continues to evolve, but essential aspects remain: SYNGAP1 as a lead program & a strong team. +Support Harper #JuggleIsReal - #S10e127
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A patient dosed, new site, audited financials, conference reviews, EOY giving, two studies to join! - #S10e126
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ICD-11, SYNGAP1 Adult Paper & Study, AES, #SyngapConf, Frazier Eye Tracking Study - #S10e125
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Giving Tuesday, #SyngapConf, #FasterCures & Happy Thanksgiving - #S10e123
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The more we own our EEGs, the sooner we get a biomarker. Simple. And remember to get Dinner tickets for the conference! - #S10e123
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Study Invitation - Everyone with a laptop can help us make an easy at home validated measure to de risk clinical trials. Sign up now for this #SRFunded effort - #S10e122 #SRFFrazier
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SYNGAP1 Missense Variants: SRF Awards Turku $100,000 to Investigate Using Structural Bioinformatics - #S10e121
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Meetings Matter. Join this community at the #SyngapConf. The Gala was a hit (again). And our report from #PCEM2023. Vicky’s at #Bio - #S10e120
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“I’m afraid to Hope again…” & Melissa – Reflections on ENDD at CHOP, #UFDCure Cannonball, Scramble - #S10e119
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