CureSHANK

‼️Closing Today‼️ Caring for someone with Phelan-McDermid syndrome (PMS-SHANK3) is a full-time job with quality of life and economic impacts that have never been fully measured, until now. As parents and caregivers, we know how complex and demanding life with PMS-SHANK3 can be. The time, energy, emotional strain, and out-of-pocket costs required to manage medical needs, therapies, sleep disruption, behavioral challenges, and safety concerns are extraordinary. Yet, they have never been fully measured. Today, there is no PMS-specific study that captures the true, real-world impact of caregiving. As a result, the burden of PMS-SHANK3 remains largely invisible. We are inviting caregivers to participate in a confidential research study designed to change that. Why participate? ➡️ Help make the real impact of PMS-SHANK3 visible ➡️ Advance research and treatment development ➡️ Advocate for better support for PMS families ➡️ Eligible participants will be compensated with a minimum of $50 on survey completion Link in bio to learn more and see if you’re eligible. #LinkInBio #PhelanMcDermidSyndrome #RareDiseaseAwareness #RareDiseaseResearch #CureSHANK

‼️Final Reminder‼️ Caring for someone with Phelan-McDermid syndrome (PMS-SHANK3) is a full-time job with quality of life and economic impacts that have never been fully measured, until now. As parents and caregivers, we know how complex and demanding life with PMS-SHANK3 can be. The time, energy, emotional strain, and out-of-pocket costs required to manage medical needs, therapies, sleep disruption, behavioral challenges, and safety concerns are extraordinary. Yet, they have never been fully measured. Today, there is no PMS-specific study that captures the true, real-world impact of caregiving. As a result, the burden of PMS-SHANK3 remains largely invisible. We are inviting caregivers to participate in a confidential research study designed to change that. Why participate? ➡️ Help make the real impact of PMS-SHANK3 visible ➡️ Advance research and treatment development ➡️ Advocate for better support for PMS families ➡️ Eligible participants will be compensated with a minimum of $50 on survey completion Link in bio to learn more and see if you’re eligible. #LinkInBio #PhelanMcDermidSyndrome #RareDiseaseAwareness #RareDiseaseResearch #CureSHANK

It’s May, which means the latest CureSHANK Community News is here! We’re thrilled to share some major strides for PMS research & treatments. � In this month's edition: �🔬 PMS Caregiver Burden of Illness Study — enrollment into the study ends May 4th! 💡 Highlights from the PMS Drug Development Symposium 📋 New Milestone Survey 💊 New site for the Koala Clinical Study� 🧬 Missed by design: how current testing fails individuals with PMS�� Don’t miss it — click the link in our bio! And if something resonates, share it with your community. Every share helps us reach more PMS families.�� #CureSHANK #PMS #PhelanMcDermid #PhelanMcDermidSyndrome #RareDisease #CommunityNews #RareDiseaseAwareness #PatientAdvocacy #CaregiverResearch #ClinicalTrials #DrugDevelopment #ParticipateInResearch

‼️Deadline approaching‼️ Caring for someone with Phelan-McDermid syndrome (PMS-SHANK3) is a full-time job with quality of life and economic impacts that have never been fully measured, until now. As parents and caregivers, we know how complex and demanding life with PMS-SHANK3 can be. The time, energy, emotional strain, and out-of-pocket costs required to manage medical needs, therapies, sleep disruption, behavioral challenges, and safety concerns are extraordinary. Yet, they have never been fully measured. Today, there is no PMS-specific study that captures the true, real-world impact of caregiving. As a result, the burden of PMS-SHANK3 remains largely invisible. We are inviting caregivers to participate in a confidential research study designed to change that. Why participate? ➡️ Help make the real impact of PMS-SHANK3 visible ➡️ Advance research and treatment development ➡️ Advocate for better support for PMS families ➡️ Eligible participants will be compensated with a minimum of $50 on survey completion Link in bio to learn more and see if you’re eligible. #LinkInBio #PhelanMcDermidSyndrome #RareDiseaseAwareness #RareDiseaseResearch #CureSHANK

CureSHANK’s 2026 Phelan-McDermid Syndrome Drug Development Symposium was an uplifting display of community coming together for a shared goal: advancing science and building a path towards treatments for those living with PMS. We’d like to extend our deepest gratitude to the symposium attendees for contributing their expertise, insights, and commitment to the PMS community. Read the full recap in our latest blog post to see how the discussions and discoveries made at the symposium will help us shape the future of PMS drug development. 🔗 Link in bio We’re building the path to therapies. Together. #PhelanMcDermidSyndrome #PMSResearch #PMSAwareness #CureSHANK #GeneticTesting #RareDiseaseAwareness #RareDiseaseCommunity #PatientAdvocacy #ClinicalResearch #ClinicalTrials #CommunityImpact

‼️Deadline Approaching: Join the PMS caregiver study by May 4th! Caring for someone with Phelan-McDermid syndrome (PMS-SHANK3) is a full-time job with quality of life and economic impacts that have never been fully measured, until now. As parents and caregivers, we know how complex and demanding life with PMS-SHANK3 can be. The time, energy, emotional strain, and out-of-pocket costs required to manage medical needs, therapies, sleep disruption, behavioral challenges, and safety concerns are extraordinary. Yet, they have never been fully measured. Today, there is no PMS-specific study that captures the true, real-world impact of caregiving. As a result, the burden of PMS-SHANK3 remains largely invisible. We are inviting caregivers to participate in a confidential research study designed to change that. Why participate? ➡️ Help make the real impact of PMS-SHANK3 visible ➡️ Advance research and treatment development ➡️ Advocate for better support for PMS families ➡️ Eligible participants will be compensated with a minimum of $50 on survey completion Link in bio to learn more and see if you’re eligible. #LinkInBio #PhelanMcDermidSyndrome #RareDiseaseAwareness #RareDiseaseResearch #CureSHANK

❗REMINDER❗Calling PMS Caregivers: Join Our Community Webinar about a Research Opportunity A new virtual research opportunity for PMS families is on the horizon! Join our upcoming community webinar to hear directly from the research team, understand the purpose of the study, and find out what participation involves. Open to all caregivers who want to stay informed and engaged with PMS research efforts. When: April 28, 4:00 PM PDT / 7:00 PM EDT April 29, 7:00 PM PDT / 10:00 PM EDT Register here: https://linktr.ee/pmscaregiverstudy #PhelanMcDermidSyndrome #ResearchOpportunity #CaregiverResearch #NaturalHistoryStudy #PMS #CommunityWebinar #ParticipateInResearch #CaregiverAdvocacy #PatientAdvocacy #RareDiseaseAdvocacy #RareDiseaseResearch #RareDiseaseAwareness

Discover How You Can Help Advance PMS Research - Webinar Invite Caregivers of individuals with Phelan‐McDermid syndrome (PMS) are invited to join a no-cost informational webinar about a new natural history study! Learn what the study involves, who may be eligible, what participation looks like, and how this research could contribute to understanding developmental changes in PMS. We want to hear your questions! When: April 28, 4:00 PM PDT / 7:00 PM EDT April 29, 7:00 PM PDT / 10:00 PM EDT Register here: https://linktr.ee/pmscaregiverstudy #PhelanMcDermidSyndrome #ResearchOpportunity #CaregiverResearch #NaturalHistoryStudy #PMS #CommunityWebinar #ParticipateInResearch #CaregiverAdvocacy #PatientAdvocacy #RareDiseaseAdvocacy #RareDiseaseResearch #RareDiseaseAwareness

‼️Reminder: There's still time to join this PMS caregiver study! Caring for someone with Phelan-McDermid syndrome (PMS-SHANK3) is a full-time job with quality of life and economic impacts that have never been fully measured, until now. As parents and caregivers, we know how complex and demanding life with PMS-SHANK3 can be. The time, energy, emotional strain, and out-of-pocket costs required to manage medical needs, therapies, sleep disruption, behavioral challenges, and safety concerns are extraordinary. Yet, they have never been fully measured. Today, there is no PMS-specific study that captures the true, real-world impact of caregiving. As a result, the burden of PMS-SHANK3 remains largely invisible. We are inviting caregivers to participate in a confidential research study designed to change that. Why participate? ➡️ Help make the real impact of PMS-SHANK3 visible ➡️ Advance research and treatment development ➡️ Advocate for better support for PMS families ➡️ Eligible participants will be compensated with a minimum of $50 on survey completion Link in bio to learn more and see if you’re eligible. #LinkInBio #PhelanMcDermidSyndrome #RareDiseaseAwareness #RareDiseaseResearch #CureSHANK

We’d like to recognize Cure as the exceptional host of CureSHANK’s 2026 Phelan-McDermid Syndrome Drug Development Symposium. Over the past few days at Cure, we brought together researchers, clinicians, industry leaders, investors, and patient advocates. Each brought their critical perspective and urgency to a shared goal: accelerating life-transforming therapies for individuals living with Phelan-McDermid Syndrome. The lived experience insights, scientific discussions, and emerging data presented at the Symposium will help us work toward closing the gap between discovery and clinical impact. Cure’s commitment to supporting healthcare innovation made them a natural and invaluable partner in this work. Through their Collaboration Residency and Membership program, they’ve created a space that helps innovators accelerate their business from concept to commercialization. Thank you to Cure for not just hosting this gathering in their beautiful venue, but for nurturing a safe space for meaningful collaboration and progress. Learn more about Cure’s mission: wewillcure.com @wewillcure #CureNYC #CommunityImpact #PhelanMcDermidSyndrome #PMSResearch #PMSAwareness #CureSHANK #GeneticTesting #RareDiseaseAwareness #RareDiseaseCommunity #PatientAdvocacy #ClinicalResearch #ClinicalTrials

At the symposium, we were honored to welcome an extraordinary group of researchers, clinicians, and industry leaders who shared their expertise, insights, and dedication to advancing PMS drug development. We are deeply grateful to all of the speakers for their presentations and participation in our panels. Their contributions to the science and to our community are invaluable. The knowledge shared at this symposium plays a critical role in supporting our work to accelerate life-transforming therapies for individuals living with PMS. #PhelanMcDermidSyndrome #PMSResearch #PMSAwareness #CureSHANK #GeneticTesting #RareDiseaseAwareness #RareDiseaseCommunity #PatientAdvocacy #ClinicalResearch #ClinicalTrials

“There’s an infinite number of new directions that hopefully people will be interested in pursuing…there’s tons of room for promise and optimism.” These words from Dr. Alex Kolevzon capture the spirit of the 2026 PMS Drug Development Symposium perfectly. We are so grateful for your expertise, your dedication, and your hope. We’re building the path to therapies. Together. @seaverautismcenter #PhelanMcDermidSyndrome #PMSResearch #PMSAwareness #CureSHANK #GeneticTesting #RareDiseaseAwareness #RareDiseaseCommunity #PatientAdvocacy #ClinicalResearch #ClinicalTrials