@pmsf_official

pmsf_official has been a member of Linktree for 2 years and joined in March 2024. Resources pmsf_official has populated their site with include: • Join PMSF – Phelan-McDermid Syndrome Foundation • SHANK3 Inform Genetic Program • PYC Update at 2026 PMSF Family Conference • Medical and Scientific Glossary – Phelan-McDermid Syndrome Foundation • Jaguar Gene Therapy Statement & FAQ *UPDATED 7/8/26* – Phelan-McDermid Syndrome Foundation • Phelan-McDermid Syndrome Foundation | Official Merchandise | Bonfire • Updated Prevalence - Levy et al., 2026 • Lug's Conference Involvement & Discount Code • Autism BrainNet • View 2026 family conference agenda • Praxis Precision Medicines • PMSF Facebook Live with CSO Dr. Lauren Schmitt • Rare Epilepsy Network (REN) Stakeholder Activity, Experiences, Education, and Needs Survey • Register for CANDID/AGENDA Research Update on Zoom • Home - CANDID • Autism BrainNet - Ask Me Anything on Reddit • Jaguar's Caregiver Study Webinar Sign-Up • Blog Post - Updates on the PMS Natural History Study • EMERALD Study Webinar • Giving Challenge: April 15-16 (noon - noon ET) • Pathways Education Series - Phelan-McDermid Syndrome Foundation • Rare Disease Day 2026: Raising Awareness for Phelan-McDermid Syndrome - Phelan-McDermid Syndrome Foundation • Research study: Shank3B−/− pathophysiology: Early metformin treatment rescues behavioural deficits and normalises exacerbated mRNA translation - ScienceDirect • Early Metformin Treatment in a SHANK3 Mouse Model - Phelan-McDermid Syndrome Foundation • Survey on Resources for Clinic and Research Visits • 2026 PMSF Family Conference - Abstract Submission • Every Inch Counts: Updates on the Inchstone Project with Drs. Natasha Ludwig and Jenny Downs • Phelan-McDermid Syndrome Healthcare Provider Survey to Gather Insights on Your Loved One’s Care Team • Phelan-McDermid Syndrome Neuropsychiatric Illness Study • Podcast on Spotify - Autism BrainNet with Dr. Alycia Hallady and Lilliam Acosta • Gene Therapy 101 Webinar Recap • YouTube - Autism BrainNet with Dr. Alycia Hallady and Lilliam Acosta • 2026 Conference - Phelan-McDermid Syndrome Foundation • Neuren Press Release 10/20/25 • PMSF Website • Blue Meal GI Transit Informational Video • Give your gift today! - PMSF Donation Page • Upload Family Photos Here! • Dr. Julia Dallman - 2023 PMSF Translational Research Grant Awardee Update • 2026 PMSF Family Conference Whova App • Blue Meal GI Transit Study • DEE-P Understanding ASOs and Informed Consent Webinar Registration • Epilepsy & EEG Abnormalities - 2024 PMSF Family Conference - YouTube • PYC Therapeutics Webinar Takeaways – Phelan-McDermid Syndrome Foundation • Dr. Sue Fletcher and Dr. Rebecca Simmons - Development of an RNA therapeutic for Phelan-McDermid syndrome - The Phelan-McDermid Podcast: Sharing Research, Progress, and Hope | Podcast on Spotify • Seizure Action Plan Templates • Neuren's Koala Study Website • Webinar on EMERALD Study • 9th Annual Team Matthew Luis Fundraiser for PMSF – Phelan-McDermid Syndrome Foundation • Custom Ink Online Stores - PHELAN LUCKY • 2026 PMSF Family Conference Agenda – Phelan-McDermid Syndrome Foundation • Feeding Tube Awareness Week: Tell Others - Oley Foundation • Blog Post - Potential Blood-Based Biomarkers • Feeding Tube Awareness Week: How enteral nutrition fuels their patients | IU Health • New Publication - Novel Blood-Based Biomarkers • PMSF CEO Opportunity - Development Guild DDI • NORD Clinical Research Webinar Registration • Current Open Research Studies • PMSF Welcomes Christopher Winrow, PhD, to Board of Directors – Phelan-McDermid Syndrome Foundation • NORD Blogpost • Pathways Education Series • 2026 PMSF Family Conference Session Topics • Jaguar - Developmental Milestone Assessment • Webinar on Jaguar's Developmental Milestone Assessment • Welcome Our New CEO • PMSF | Official Merchandise | Bonfire • Behavior, Cognition, and Beyond: Updates from the PMS Natural History Study • New Blog! Neuroinflammation in Shank3 mice • Rare Epilepsy Quality of Life (QoL) Survey • D.E.E.P. D.I.V.E. Webinar Registration • PYC Therapeutics Webinar Q&A Infosheet • August 25, 2025 Neuren Press Release • The Phelan-McDermid Podcast: Sharing Research, Progress, and Hope • 2025 Shannon O'Boyle Memorial Grant Recipient • 2025 PMSF Impact Report • Driving Research Breakthroughs - Phelan-McDermid Syndrome Foundation • Jaguar Gene Therapy Updated FAQ 9/22/25 • Caregiver Support Groups • Current Open Research - Phelan-McDermid Syndrome Foundation • Phelan-McDermid Syndrome Awareness Day • Home - Phelan-McDermid Syndrome Foundation • Natural History Study • Jaguar Gene Therapy Updated FAQ 9/18/25 • How are Phelan-McDermid Syndrome and Autism Related? - Phelan-McDermid Syndrome Foundation • Catatonia and Severe and Challenging Behaviors Webinar Recording • Jaguar Gene Therapy | Accelerating breakthroughs in gene therapy. • Updates on the 2024 PMSF Research Grants • The First Multidisciplinary Phelan-McDermid Syndrome Clinic Opens at Cincinnati Children’s - Phelan-McDermid Syndrome Foundation • PMSF Team Update: Moving Forward with Purpose • WINGS Study Interest Form • Immersive Genetics 101 - 2024 PMSF Family Conference • HOME | WINGS Study • Catatonia Web Series Registration • ECHO PMS Neuropsychiatric Consultation Group - Phelan-McDermid Syndrome Foundation • Neuren Pharmaceuticals Update 5/13/25 • Clinic and Research Visit Ready: New PMSF Resources for Families - Phelan-McDermid Syndrome Foundation • 2024 Family Support Survey • Home - PYC Therapeutics • PYC Therapeutics Community Webinar Takeaways • Neuren Pharmaceuticals • Update from the MAC: Understanding Mortality in Phelan-McDermid syndrome • Jaguar Gene Therapy Announces Successful Completion of Dosing of First Patient Cohort in Clinical Trial Evaluating JAG201 for the Treatment of a Leading Monogenic Cause of Autism Spectrum Disorder Known as Phelan-McDermid Syndrome | Jaguar Gene Therapy • Custom Ink Online Stores - 1/2 Way To St. Pat's Day - Phelan Lucky 2025 • Jaguar Gene Therapy FAQ *UPDATED 2/23/26* • Neuropsychiatric Illness in PMS Kohlenberg 2024 • Endpoints News Article on JAG201 • Gastrointestinal Disorders - 2024 PMSF Family Conference • Welcome Robbie Baker: Getting to Know PMSF’s New CEO - Phelan-McDermid Syndrome Foundation • PYC Therapeutics Webinar - Zoom Link • Empowering Patients 2026: A Cell and Gene Therapies Summit | ASGCT • Jaguar Gene Therapy's Statement 4/29/25 • Consensus Recommendations on Epilepsy in Phelan-McDermid syndrome • Conference Updates from Dr. Lauren • Neuren's Press Release 2/6/26 • Overview of Clinical Trials - 2024 PMSF Family Conference • Publication update: What are “Mini-Brains”? • Upload Photos of Your Loved One • Professionals 2026 PMSF Family Conference Registration • PMSF | Workplace Donations • Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies | Quality of Life Research | Springer Nature Link • Diane Joins Conference in Barcelona • NNZ-2591 Publication • The Diagnostic Odyssey: Delays in Diagnosing Phelan-McDermid Syndrome • Blog Post: NNZ-2591 Phase 2 Results • Medical Advisory - Very Rare Leukodystrophy - Phelan-McDermid Syndrome Foundation • Breaking Down NIH Funding for Researh • Overview of Clinical Trials at the 2024 PMSF Family Conference • Dr. Pilar Trelles and Tess Levy - 2024 Shannon O'Boyle Memorial Neuropsychiatric Illness Awardees • Why Sharing Clinical Trial Experiences Can Harm Research - Phelan-McDermid Syndrome Foundation • Epilepsy Surgery Alliance Power Hour Webinars • Blog: Why Nutrition Matters in Phelan-McDermid Syndrome - Phelan-McDermid Syndrome Foundation • Antisense Oligonucleotides – what are they and why are we hearing more about them? • Nutrition Guidelines - Phelan-McDermid Syndrome Foundation • Register for the Gene Therapy 101 Webinar • Pathways Education Series: Nutrition and Phelan-McDermid Syndrome • Neuren's Phase 3 NNZ-2591 Trial - Blog Post • Neuren’s Phase 3 NNZ-2591 Trial - Infosheet • PMSF Store - Shop Now - June 2-22 • Updates on the PMS Natural History Study - Phelan-McDermid Syndrome Foundation • Gene Therapy 101 Survey • WINGS Study Information • BILLY Footwear | Fashion and Function For All • Seizure & Epilepsy 24/7 Helpline • Vaccinations - Phelan-McDermid Syndrome Foundation • Seizure Action Plan • Epilepsy and Seizure Update from the Natural History Study - Phelan-McDermid Syndrome Foundation • From Awareness to Action: Advocacy for Our Phelan-McDermid Syndrome Community • Jaguar Gene Therapy FAQ Update 10/22/25 • Meet Ashlyn Brunet A World Record Story - Issuu • Statement from Jaguar Gene Therapy 10/22/25 • www.rareacrossamerica.org • Make your Driving Research Breakthroughs gift today • Family Reviewer Interest Form for Research Requests • PYC Update Video • U.S. Senate: Contacting U.S. Senators • PYC Press Release • Family Reviewer Interest Form for PMSF Grants • GeneDx has announced its new Autism Partnership Program with Jaguar Gene Therapy • Raising Hope Through Movement Toolkit • The Phelan-McDermid Syndrome Podcast with Jaguar Gene Therapy • Ask Your Questions - Gene Therapy 101 • Catatonia and Severe and Challenging Behaviors SIG - YouTube • Make Your Raising Hope Gift Today! • How PMS is Diagnosed - Phelan-McDermid Syndrome Foundation • Dr. Kristy Johnson - 2024 PMSF Innovation Grant Awardee Update - Part 2 • "First 100 Days" - Phelan-McDermid Syndrome Foundation • PYC Press Release Update 12/30/24 • Phelan-McDermid Syndrome Clinics • The Phelan-McDermid Podcast: Sharing Research, Progress, and Hope with Dr. Bridgette Moffitt • Celebrate & Support PMSF • Phelan-McDermid Syndrome Foundation | Workplace Donations • Phelan-McDermid Syndrome Natural History Study Webinar • PMSF 2023 Grant Update • Additional Findings in Phelan‐McDermid Syndrome Publication • Understanding Mortality in Phelan-McDermid Syndrome • Gene Therapy 101 Webinar Recording | Hosted by PMSF & ASGCT • February Pathways Education Series Registration • Diagnosing the Undiagnosed: PMSF Partnering with BioLogic Pharma Solutions to Help Improve SHANK3 Testing • Custom Ink Online Stores - Phelan Lucky 2025 • PMSF New Family Webinar • Ad Hoc Group 119th Congress Letter 1.31.pdf • Class I vs Class II Deletions: What's the Difference? • PMSF 2025 Grant Opportunities • TakeAction: Medicaid Is a Lifeline for People With Disabilities! • SHANK3 in Phelan-McDermid syndrome • PYC Therapeutics Webinar 3/13 @ 7pm ET • Phelan-McDermid Syndrome Datahub • Medical Research Fund - Roll Call • Clinical Care Guidelines • Science and Research Administrator Job Description • ICD-10 Code • Communication Survey • Complex Behavior Medications Resource • PMSF Chief Executive Officer (CEO) Job Posting • How are Phelan-McDermid Syndrome and Autism Related? • Vote for the Name of Our Podcast • Sleep and Sensory Research Survey • New Family Webinar (for new & long-time PMSF members) • Start a fundraiser • 2024 PMSF Conference Recordings • Mount Sinai and Sinergia Webinar: Navigate the Autism Evaluation Process • PYC Therapeutics Update • American Epilepsy Society’s Medication Access Survey • UNSEEN Documentary | 2024 Family Caregiver Month Screening • C.A.R.E Binder (Caring for Adults with a Rare Epilepsy) • Epilepsy Awareness Month Resources • PMSF 2024 Grant Award Recipients • DEE Community Update • Jaguar Gene Therapy - Pediatric Clinical Trial Update • Genotype-Phenotype Research Publication • CANDID Publication • Drugs in Development • Jaguar Gene Therapy Community Letter & FAQ • Jaguar 7/11 Webinar Recording • PMSAD Photo Frame 2024 • Convos with Dr. Kate PODCAST • Caregiver Quality of Life Survey • SUDEP Action Day • 2024 PMSF Conference Survey • Mount Sinai Webinars • FAAST Webinar for August • AAC Webinar with Kate Ahern • Clinical Trials Webpage | Past Trials • Child Neurology Foundation "Unseen" Documentary • Jaguar Community Poll • Parent/Sibling Research Study Survey • New Science & Research Webpages • Family Participation in Research Webpage • Sam's Sibs Stick Together Room • Lennox-Gastaut Syndrome Awareness on Today Show • Jaguar Gene Therapy Poster ASGCT 2024 • Giving Challenge - April 9&10!