@pmsf_official

pmsf_official has been a member of Linktree for 2 years and joined in March 2024. Besides social media accounts, pmsf_official has populated their site with 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, Pathways Education Series - Phelan-McDermid Syndrome Foundation, 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, The Phelan-McDermid Podcast: Sharing Research, Progress, and Hope, 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, 2026 Conference - Phelan-McDermid Syndrome Foundation, 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, PMSF Website, 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, Behavior, Cognition, and Beyond: Updates from the PMS Natural History Study, 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!.