Nemaline Myopathy Non-Profit

𝗦𝗮𝘃𝗲 𝘁𝗵𝗲 𝗗𝗮𝘁𝗲: 𝗔𝗙𝗕𝗦 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗨𝗽𝗱𝗮𝘁𝗲 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 Get a front-row seat to the science you make possible! We are excited to invite you to our upcoming webinar, 𝗔𝗙𝗕𝗦 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗨𝗽𝗱𝗮𝘁𝗲: 𝗦𝗽𝗼𝘁𝗹𝗶𝗴𝗵𝘁𝘀 & 𝗜𝗻𝘀𝗶𝗴𝗵𝘁𝘀, on 𝗝𝘂𝗻𝗲 𝟲𝘁𝗵. This event is a unique opportunity to hear directly from the experts who are pushing the boundaries of muscle biology to find effective treatments for Nemaline Myopathy. 𝗪𝗵𝗮𝘁 𝘁𝗼 𝗘𝘅𝗽𝗲𝗰𝘁: 𝗧𝗵𝗲 𝗕𝗶𝗴 𝗣𝗶𝗰𝘁𝘂𝗿𝗲: AFBS will provide an overview of our latest research investments and a clear look at the "life cycle" of drug and therapy development, helping you understand exactly where we are on the road to clinical trials. 𝗘𝘅𝗽𝗲𝗿𝘁 𝗦𝗽𝗼𝘁𝗹𝗶𝗴𝗵𝘁𝘀: Hear from 𝗗𝗿. 𝗝𝗶𝗺 𝗗𝗼𝘄𝗹𝗶𝗻𝗴 (University of Pennsylvania) and 𝗗𝗿. 𝗩𝗮𝗻𝗱𝗮𝗻𝗮 𝗚𝘂𝗽𝘁𝗮 (Brigham and Women’s Hospital), two lead investigators on active AFBS-funded projects. They'll share their exciting progress and the latest milestones from their labs! 𝗬𝗼𝘂𝗿 𝗤𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 𝗔𝗻𝘀𝘄𝗲𝗿𝗲𝗱: The presentations will be followed by a moderated Q&A session with the scientists and our Scientific Director, 𝗚𝘂𝘀𝘁𝗮𝘃𝗼 𝗗𝘇𝗶𝗲𝘄𝗰𝘇𝗮𝗽𝗼𝗹𝘀𝗸𝗶. 𝗘𝘃𝗲𝗻𝘁 𝗗𝗲𝘁𝗮𝗶𝗹𝘀: 𝗪𝗵𝗲𝗻: June 6, 2026 𝗧𝗶𝗺𝗲: 9:00–10:30 AM PST / 12:00–1:30 PM EST 𝗪𝗵𝗲𝗿𝗲: Virtually via Zoom 𝗖𝗹𝗶𝗰𝗸 𝗛𝗲𝗿𝗲 𝘁𝗼 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗮𝗻𝗱 𝗦𝗲𝗰𝘂𝗿𝗲 𝗬𝗼𝘂𝗿 𝗦𝗽𝗼𝘁: https://us06web.zoom.us/meeting/register/FvyFDM4-T96oh1_e74JREQ#/registration (LINK IN BIO) We look forward to seeing you there as we discuss the cutting-edge research that's building strength for our entire community! #NemalineMyopathy #NMAwareness #NMResearch #ResearchUpdate #AFBS #BuildingStrengthTogether

𝗠𝘂𝘀𝗶𝗰 𝗮𝗻𝗱 𝗮 𝗠𝗶𝘀𝘀𝗶𝗼𝗻: 𝗘𝗹𝗹𝗮𝗿𝘆 𝗶𝘀 𝗥𝗮𝗶𝘀𝗶𝗻𝗴 𝗛𝗲𝗿 𝗩𝗼𝗶𝗰𝗲 𝗳𝗼𝗿 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀! 🎤💙 Meet NM Awareness Share-A-Thon Featured Fundraiser 𝗘𝗹𝗹𝗮𝗿𝘆, an 18-year-old from Rhode Island. Ellary is currently a dual-enrollment student, finishing high school while simultaneously completing her first year of college in digital media production. A musician who plays the violin and loves to sing, she’s using her platform on TikTok to normalize disability and share her journey with 𝗔𝗖𝗧𝗔𝟭-𝗿𝗲𝗹𝗮𝘁𝗲𝗱 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 with her growing audience. Ellary is clear about her goals: she wants to use her future marketing degree to ensure better disability representation and fund the research that will lead to independence for the NM community. "Although it may seem like we are limited, we can do almost anything we set our minds to if we find a way." 𝗧𝗵𝗲 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 𝗼𝗳𝗳𝗶𝗰𝗶𝗮𝗹𝗹𝘆 𝗸𝗶𝗰𝗸𝘀 𝗼𝗳𝗳 𝗼𝗻 𝗠𝗮𝘆 𝟭𝟴𝘁𝗵, 𝗯𝘂𝘁 𝘆𝗼𝘂 𝗰𝗮𝗻 𝘀𝘁𝗮𝗿𝘁 𝘀𝘂𝗽𝗽𝗼𝗿𝘁𝗶𝗻𝗴 𝗘𝗹𝗹𝗮𝗿𝘆 𝘁𝗼𝗱𝗮𝘆: 📖 𝗥𝗲𝗮𝗱 𝗘𝗹𝗹𝗮𝗿𝘆'𝘀 𝗳𝘂𝗹𝗹 𝗽𝗿𝗼𝗳𝗶𝗹𝗲 𝗵𝗲𝗿𝗲: /blog/music-and-a-mission-ellary-is-raising-her-voice-for-nm-awareness/ (LINK IN BIO) 💰 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗘𝗹𝗹𝗮𝗿𝘆'𝘀 𝗱𝗼𝗻𝗮𝘁𝗶𝗼𝗻 𝗽𝗮𝗴𝗲 𝗵𝗲𝗿𝗲: /f/hope-and-strength-for-nemaline-myopathy (LINK IN BIO) 🎵𝗙𝗼𝗹𝗹𝗼𝘄 𝗘𝗹𝗹𝗮𝗿𝘆 𝗼𝗻 𝗧𝗶𝗸 𝗧𝗼𝗸 (@𝗲𝗹𝗹𝗮𝗿𝘆_𝘀𝗶𝗻𝗴𝘀): /@ellary_sings (LINK IN BIO) #NemalineMyopathy #NMShareAThon2026 #BuildingStrength #ACTA1 #RepresentationMatters #YouthAmbassador #RareDiseaseAwareness

𝗡𝗮𝘁𝘂𝗿𝗮𝗹 𝗛𝗶𝘀𝘁𝗼𝗿𝘆 𝗦𝘁𝘂𝗱𝘆 𝗢𝗽𝗽𝗼𝗿𝘁𝘂𝗻𝗶𝘁𝘆 - 𝗬𝗼𝘂𝗿 𝗰𝗵𝗮𝗻𝗰𝗲 𝘁𝗼 𝗱𝗶𝗿𝗲𝗰𝘁𝗹𝘆 𝗶𝗺𝗽𝗮𝗰𝘁 𝘁𝗵𝗲 𝘀𝗲𝗮𝗿𝗰𝗵 𝗳𝗼𝗿 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁𝘀! We've reached a major milestone in our mission! For the first time, comprehensive 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗡𝗮𝘁𝘂𝗿𝗮𝗹 𝗛𝗶𝘀𝘁𝗼𝗿𝘆 𝗦𝘁𝘂𝗱𝗶𝗲𝘀 are underway to create the essential "road map" researchers and regulatory agencies need to approve future clinical trials. 𝗪𝗵𝗮𝘁’𝘀 𝗛𝗮𝗽𝗽𝗲𝗻𝗶𝗻𝗴 𝗡𝗼𝘄: • 𝗡𝗼𝗿𝘁𝗵 𝗔𝗺𝗲𝗿𝗶𝗰𝗮: Our first study site at Stanford University is officially up and running and now enrolling participants aged 0-18 with ACTA1 or NEB-related Nemaline Myopathy for a 3 year study. • 𝗚𝗹𝗼𝗯𝗮𝗹 𝗖𝗼𝗼𝗿𝗱𝗶𝗻𝗮𝘁𝗶𝗼𝗻: We are working in tandem with active study sites in 𝗕𝗿𝗮𝘇𝗶𝗹 and a sister study in the 𝗨𝗞 to build a powerful, standardized global dataset. • 𝗗𝗶𝗴𝗶𝘁𝗮𝗹 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵: Our partnership with Citizen Health and the Chan Zuckerberg Initiative allows families to contribute to a Digital Retrospective Study from the comfort of home. These studies are the crucial bridge between laboratory breakthroughs and real-world treatments. By documenting how NM progresses over time, we are ensuring that when a therapy is ready, the pathway to approval is already paved. 🔗 𝗙𝗼𝗿 𝗺𝗼𝗿𝗲 𝗱𝗲𝘁𝗮𝗶𝗹𝘀 𝗼𝗻 𝘁𝗵𝗲𝘀𝗲 𝘀𝘁𝘂𝗱𝗶𝗲𝘀 𝗮𝗻𝗱 𝗶𝗻𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻 𝗼𝗻 𝗵𝗼𝘄 𝘆𝗼𝘂 𝗰𝗮𝗻 𝗽𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗲, 𝘃𝗶𝘀𝗶𝘁 𝘁𝗵𝗲 𝗔𝗙𝗕𝗦 𝗯𝗹𝗼𝗴! /blog/mapping-the-future-a-global-update-on-nm-natural-history-studies/ (LINK IN BIO) #nemalinemyopathy #nemalinemyopathyawareness #nemalinemyopathyresearch #acta1 #NEB #NaturalHistoryStudy #Stanford

𝗥𝗲𝘀𝘂𝗹𝘁𝘀 𝗶𝗻 𝗞𝗕𝗧𝗕𝗗𝟭𝟯 𝗣𝗿𝗲𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗠𝗼𝘂𝘀𝗲 𝗠𝗼𝗱𝗲𝗹𝘀 𝗚𝗶𝘃𝗲 𝗛𝗼𝗽𝗲 𝗳𝗼𝗿 𝗥𝗲𝘀𝘁𝗼𝗿𝗮𝘁𝗶𝗼𝗻 𝗼𝗳 𝗠𝘂𝘀𝗰𝗹𝗲 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵 🧬✨ We have some exciting news from the lab that's changing how we think about 𝗞𝗕𝗧𝗕𝗗𝟭𝟯-𝗿𝗲𝗹𝗮𝘁𝗲𝗱 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 (𝗡𝗘𝗠𝟲). This rarer form of NM is unique for causing "slow relaxation" in the muscles, making movement a daily challenge. In a recent study funded by AFBS, 𝗗𝗿. 𝗖𝗼𝗲𝗻 𝗢𝘁𝘁𝗲𝗻𝗵𝗲𝗶𝗷𝗺 and his team at 𝗔𝗺𝘀𝘁𝗲𝗿𝗱𝗮𝗺 𝗨𝗠𝗖 tested a new genetic "tool" called 𝘀𝗵𝗼𝗿𝘁 𝗵𝗮𝗶𝗿𝗽𝗶𝗻 𝗥𝗡𝗔 (𝘀𝗵𝗥𝗡𝗔) designed to target and reduce the harmful instructions in muscle cells. The results in preclinical mouse models have exceeded our expectations: ✅ 𝗙𝘂𝗹𝗹 𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻: When used early, the therapy completely stopped the disease before it could start. ✅ 𝗧𝗼𝘁𝗮𝗹 𝗥𝗲𝘀𝘁𝗼𝗿𝗮𝘁𝗶𝗼𝗻: In mouse models where the disease was already advanced, the treatment completely restored muscle structure and strength. This is a major proof-of-concept that even when NM is well-established, it's scientifically possible for muscles to heal and function normally again. While these results are currently in preclinical mouse models, they provide the essential foundation we need to move forward on the long road to our ultimate goal: safe and effective human clinical trials. 📖 𝗚𝗲𝘁 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹 "𝗹𝗮𝘆𝗺𝗮𝗻'𝘀" 𝗯𝗿𝗲𝗮𝗸𝗱𝗼𝘄𝗻 𝗼𝗻 𝗼𝘂𝗿 𝗯𝗹𝗼𝗴: /blog/turning-the-tide-on-kbtbd13-an-exciting-update-from-dr-coen-ottenheijm/ (LINK IN BIO) #NemalineMyopathy #KBTBD13 #NEM6 #ResearchBreakthrough #ScienceIsHope #BuildingStrength #StrengthInAction #RareDiseaseAwareness

(𝗠𝗲𝗲𝘁 𝗟𝘂𝗰𝗮𝘀: 𝗢𝘂𝗿 𝗙𝗶𝗿𝘀𝘁 𝟮𝟬𝟮𝟲 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 𝗙𝗲𝗮𝘁𝘂𝗿𝗲𝗱 𝗙𝘂𝗻𝗱𝗿𝗮𝗶𝘀𝗲𝗿! 🎧 Lucas is an 11-year-old from West Hartford who doesn't let anything slow his tempo. Whether he's at his DJ controller spinning his favorite Daft Punk tracks or hanging out with his cat, Aleister (aka "Sweetie"), he's described by his mom, Monica, as "fiercely independent". Living with the 𝗔𝗖𝗧𝗔𝟭 subtype of 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆, Lucas has spent a decade breaking boundaries-- from a challenging first year living in the hospital and a rehab facility to his recent milestone of getting his trach removed and finally learning to swim. When asked why their family is joining the NM Awareness Share-A-Thon this year, Monica explained, "If we can help raise awareness and move closer to treatments, then we are in!" 𝗧𝗵𝗲 𝟮𝟬𝟮𝟲 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 Our second annual Share-A-Thon officially kicks off on May 18th. This year, your clicks have more power than ever: • 𝗧𝗵𝗲 $𝟮𝟱,𝟬𝟬𝟬 𝗖𝗵𝗮𝗹𝗹𝗲𝗻𝗴𝗲: If we reach our milestone of 500 social media shares between May 18th and May 31st, it will trigger a matching gift of up to $25,000! • 𝗗𝗼𝗻𝗮𝘁𝗲 𝘁𝗼 𝗟𝘂𝗰𝗮𝘀: Help fuel the research that leads to the independence Lucas works for every day. • 𝗦𝘁𝗮𝗿𝘁 𝗬𝗼𝘂𝗿 𝗢𝘄𝗻: You can create your own fundraising page and help us reach our goal! 📖 𝗥𝗲𝗮𝗱 𝗺𝗼𝗿𝗲 𝗮𝗯𝗼𝘂𝘁 𝗟𝘂𝗰𝗮𝘀’𝘀 𝗶𝗻𝗰𝗿𝗲𝗱𝗶𝗯𝗹𝗲 𝗷𝗼𝘂𝗿𝗻𝗲𝘆 𝗼𝗻 𝗼𝘂𝗿 𝗯𝗹𝗼𝗴: /blog/faces-of-nm-lucas-d-the-rhythm-of-resilience/ (LINK IN BIO) 💰 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗟𝘂𝗰𝗮𝘀’𝘀 𝗳𝘂𝗻𝗱𝗿𝗮𝗶𝘀𝗲𝗿 𝗵𝗲𝗿𝗲: /f/help-me-fundraise-for-a-foundation-building-strength (LINK IN BIO) 📢 𝗦𝘁𝗮𝘆 𝗧𝘂𝗻𝗲𝗱: Follow our channels for more featured stories and updates as we count down to the kick-off! 𝗪𝗵𝗼 𝗲𝗹𝘀𝗲 𝗶𝘀 𝗿𝗲𝗮𝗱𝘆 𝘁𝗼 𝗵𝗲𝗹𝗽 𝘂𝘀 𝗿𝗲𝗮𝗰𝗵 𝘁𝗵𝗼𝘀𝗲 𝟱𝟬𝟬 𝘀𝗵𝗮𝗿𝗲𝘀? #NemalineMyopathy #NMShareAThon2026 #BuildingStrength #ACTA1 #RareDiseaseAwareness #DaftPunkFan #FiercelyIndependent

𝗔𝗰𝗰𝗲𝗹𝗲𝗿𝗮𝘁𝗶𝗻𝗴 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗧𝗿𝗮𝗻𝘀𝗹𝗮𝘁𝗶𝗼𝗻: 𝗡𝗲𝘄 𝗠𝗶𝗹𝗲𝘀𝘁𝗼𝗻𝗲𝘀 𝗶𝗻 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 At AFBS, we believe that strategic investment in high-impact science is the key to unlocking effective treatments for rare diseases. Today, we are proud to share the latest progress from 𝗗𝗿. 𝗩𝗮𝗻𝗱𝗮𝗻𝗮 𝗚𝘂𝗽𝘁𝗮’s lab. Focusing on the Kelch gene family (KLHL40, KLHL41, and KBTBD13), Dr. Gupta’s team is utilizing a dual-track approach of gene replacement therapy and FDA-approved drug repurposing.* 𝗦𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁 𝗺𝗶𝗹𝗲𝘀𝘁𝗼𝗻𝗲𝘀 𝗶𝗻𝗰𝗹𝘂𝗱𝗲: • 𝗦𝘂𝗿𝘃𝗶𝘃𝗮𝗹 𝗗𝗮𝘁𝗮: Successful lifespan extension in severe KLHL40 models from 1 week to over 9 months. • 𝗦𝗮𝗳𝗲𝘁𝘆 𝗣𝗿𝗼𝗳𝗶𝗹𝗲: The latest toxicity studies show the therapy is well-tolerated in major organs, clearing a major hurdle for future clinical translation. • 𝗦𝗰𝗮𝗹𝗮𝗯𝗹𝗲 𝗦𝗰𝗿𝗲𝗲𝗻𝗶𝗻𝗴: Motility improvements in zebrafish models after screening ~1,400 FDA-approved compounds. This research represents a critical step in our ongoing efforts to bridge the gap between laboratory discovery and patient care. 𝗥𝗲𝗮𝗱 𝘁𝗵𝗲 𝘁𝗲𝗰𝗵𝗻𝗶𝗰𝗮𝗹 𝗿𝗲𝗰𝗮𝗽 𝗮𝗻𝗱 𝗻𝗲𝘅𝘁 𝘀𝘁𝗲𝗽𝘀 𝗼𝗻 𝗼𝘂𝗿 𝗯𝗹𝗼𝗴: /blog/afbs-research-update-breakthrough-progress-in-the-search-for-effective-nemaline-myopathy-treatments/ (LINK IN BIO) *𝗬𝗼𝘂 𝗰𝗮𝗻 𝗵𝗲𝗮𝗿 𝗺𝗼𝗿𝗲 𝗮𝗯𝗼𝘂𝘁 𝗗𝗿. 𝗚𝘂𝗽𝘁𝗮'𝘀 𝗽𝗿𝗼𝗴𝗿𝗲𝘀𝘀 𝗱𝘂𝗿𝗶𝗻𝗴 𝗼𝘂𝗿 𝘂𝗽𝗰𝗼𝗺𝗶𝗻𝗴 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗨𝗽𝗱𝗮𝘁𝗲 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗻 𝗝𝘂𝗻𝗲 𝟲𝘁𝗵! 𝗠𝗼𝗿𝗲 𝗶𝗻𝗳𝗼 𝗰𝗮𝗻 𝗯𝗲 𝗳𝗼𝘂𝗻𝗱 𝗵𝗲𝗿𝗲: /events/afbs-research-update-webinar-spotlights-insights/ (LINK IN BIO) #MedicalResearch #Biotech #RareDisease #NonProfitImpact #GeneTherapy #ClinicalTrials #BuildingStrength

💙May is 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 and we're working to spread awareness about this rare genetic disorder that impacts the skeletal muscles we use for everything-- from moving and walking to breathing and swallowing. This video offers a brief glimpse into the lives of our NM affected community: the challenges, the triumphs, and the vital role A Foundation Building Strength plays in accelerating research while providing a lifeline of support for families. Share this video and visit our website to get involved, download graphics, or join our upcoming NM Awareness Share-A-Thon fundraiser! 🔗 buildingstrength.org/get-involved/nemaline-myopathy-awareness-month/ (LINK IN BIO!) #NMAwarenessMonth #NemalineMyopathy #BuildingStrength #RareDisease #NMShareAThon #SupportResearch #StrongerTogether

We're excited to invite our younger community members to the next 𝗔𝗙𝗕𝗦 𝗩𝗶𝗿𝘁𝘂𝗮𝗹 𝗞𝗶𝗱𝘀 𝗚𝗮𝘁𝗵𝗲𝗿𝗶𝗻𝗴! On 𝗦𝗮𝘁𝘂𝗿𝗱𝗮𝘆, 𝗠𝗮𝘆 𝟵𝘁𝗵 at 𝟭𝟮 𝗣𝗠 𝗘𝗦𝗧, youth ambassador Greta Baier will host a fun-filled Zoom session for children ages 12 and under. These monthly meetups are a wonderful way for NM-affected children to connect, play games, and share stories in a supportive environment. Due to popular demand, these gatherings are now held every single month, providing even more opportunities for our youth to build lasting friendships. If your child hasn't had a chance to attend one of our virtual gatherings, this weekend's meetup (during Nemaline Myopathy Awareness Month) is the perfect time to try it out! Please register in advance to get your link to join. We can't wait to see you there! 𝗥𝗘𝗚𝗜𝗦𝗧𝗘𝗥 𝗡𝗢𝗪: https://rutgers.zoom.us/meeting/register/2xkpqjwQSQqapAI2i0Z7RA (LINK IN BIO!)

𝗠𝗮𝘆 𝗶𝘀 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵! 💙 Today marks the start of our favorite month of the year! Throughout May, let's come together to shine a spotlight on Nemaline Myopathy (NM), celebrate the resilience of our global community, and accelerate the search for effective treatments. From profiles of affected community members to the latest research breakthroughs, we have a full calendar of content and events designed to build strength and spread awareness. Everything we do this month builds toward NM Awareness Day on May 31st! 𝗛𝗼𝘄 𝗬𝗼𝘂 𝗖𝗮𝗻 𝗛𝗲𝗹𝗽 𝗥𝗶𝗴𝗵𝘁 𝗡𝗼𝘄: One of the easiest ways to show your support is to update your social media profile picture! Let’s turn our feeds blue and show the world the strength of the NM community. You can participate in two ways: 🎨 𝗨𝘀𝗲 𝗼𝘂𝗿 𝗖𝗮𝗻𝘃𝗮 𝗧𝗲𝗺𝗽𝗹𝗮𝘁𝗲: Create your own custom NM Awareness frame with your favorite photo. 🖼️ 𝗗𝗼𝘄𝗻𝗹𝗼𝗮𝗱 𝗮 𝗚𝗿𝗮𝗽𝗵𝗶𝗰: Choose from our specially designed NM Awareness graphics to use as your profile pic all month long. 𝗚𝗲𝘁 𝘆𝗼𝘂𝗿 𝘁𝗲𝗺𝗽𝗹𝗮𝘁𝗲𝘀, 𝗴𝗿𝗮𝗽𝗵𝗶𝗰𝘀, 𝗮𝗻𝗱 𝘀𝗲𝗲 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹 𝗹𝗶𝗻𝗲𝘂𝗽 𝗼𝗳 𝗠𝗮𝘆 𝗲𝘃𝗲𝗻𝘁𝘀 𝗵𝗲𝗿𝗲: 🔗 buildingstrength.org/get-involved/nemaline-myopathy-awareness-month/ (LINK IN BIO) 𝗦𝘁𝗮𝘆 𝗧𝘂𝗻𝗲𝗱: Our 2nd Annual 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 kicks off on May 18th! Your shares can help us unlock a $25,000 matching gift to fuel life-changing research. Let’s make some noise this May! #NMAwarenessMonth #NemalineMyopathy #BuildingStrength #RareDiseaseAwareness #SupportResearch

AFBS was proud to be part of the 2026 MDA Clinical & Scientific Conference last month, joining over 2,400 researchers, clinicians, and advocates in Orlando. From the latest in gene-targeted therapies to groundbreaking muscle regeneration research, the momentum in our field has never been stronger. We’re bringing the most important insights back to the Nemaline Myopathy community. Discover how we’re strengthening connections and advancing the science that will lead to treatments. 📖 Read the full recap on our blog: /blog/2026-mda-clinical-scientific-conference/ (LINK IN BIO) #NemalineMyopathy #AFBS #MDAConference #RareDisease #MedicalResearch #BuildingStrength #NeuromuscularDisease

𝗩𝗜𝗥𝗧𝗨𝗔𝗟 𝗞𝗜𝗗𝗦 𝗚𝗔𝗧𝗛𝗘𝗥𝗜𝗡𝗚 - 𝗦𝗔𝗧𝗨𝗥𝗗𝗔𝗬, 𝗔𝗣𝗥𝗜𝗟 𝟭𝟭𝗧𝗛 We're excited to invite our younger community members to the next AFBS Virtual Kids Gathering! On 𝗦𝗮𝘁𝘂𝗿𝗱𝗮𝘆, 𝗔𝗽𝗿𝗶𝗹 𝟭𝟭𝘁𝗵 𝗮𝘁 𝟭𝟮 𝗣𝗠 𝗘𝗦𝗧, youth ambassador 𝗚𝗿𝗲𝘁𝗮 𝗕𝗮𝗶𝗲𝗿 will host a fun-filled Zoom session for children ages 𝟭𝟮 𝗮𝗻𝗱 𝘂𝗻𝗱𝗲𝗿. These monthly meetups are a wonderful way for NM-affected children to connect, play games, and share stories in a supportive environment. Due to popular demand, these gatherings are now held every single month, providing even more opportunities for our youth to build lasting friendships. 𝗣𝗹𝗲𝗮𝘀𝗲 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗶𝗻 𝗮𝗱𝘃𝗮𝗻𝗰𝗲 𝘁𝗼 𝗴𝗲𝘁 𝘆𝗼𝘂𝗿 𝗹𝗶𝗻𝗸 𝘁𝗼 𝗷𝗼𝗶𝗻: https://rutgers.zoom.us/meeting/register/zOmQtdzwRqGs3YF_F2_ndA (LINK IN BIO) We can't wait to see you there! #NemalineMyopathy #NMAwareness #RareDiseaseCommunity #RareDiseaseKids #AFBS

🧬 𝗥𝗘𝗦𝗘𝗔𝗥𝗖𝗛 𝗢𝗣𝗣𝗢𝗥𝗧𝗨𝗡𝗜𝗧𝗬: 𝗖𝗔𝗟𝗟𝗜𝗡𝗚 𝗔𝗟𝗟 𝗜𝗡𝗗𝗜𝗩𝗜𝗗𝗨𝗔𝗟𝗦 𝗪𝗜𝗧𝗛 𝗔𝗖𝗧𝗔𝟭 𝗔𝗡𝗗 𝗡𝗘𝗕 𝗥𝗘𝗟𝗔𝗧𝗘𝗗 𝗡𝗘𝗠𝗔𝗟𝗜𝗡𝗘 𝗠𝗬𝗢𝗣𝗔𝗧𝗛𝗬! We're calling for 𝗨.𝗦. 𝗯𝗮𝘀𝗲𝗱 𝗶𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝘀 or caretakers of individuals with 𝗔𝗖𝗧𝗔𝟭 𝗼𝗿 𝗡𝗘𝗕-𝗿𝗲𝗹𝗮𝘁𝗲𝗱 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 to join a vital retrospective digital 𝗻𝗮𝘁𝘂𝗿𝗮𝗹 𝗵𝗶𝘀𝘁𝗼𝗿𝘆 𝘀𝘁𝘂𝗱𝘆. This exciting project is a partnership between 𝗖𝗶𝘁𝗶𝘇𝗲𝗻 𝗛𝗲𝗮𝗹𝘁𝗵, 𝗔𝗙𝗕𝗦, 𝗮𝗻𝗱 𝘁𝗵𝗲 𝗖𝗵𝗮𝗻 𝗭𝘂𝗰𝗸𝗲𝗿𝗯𝗲𝗿𝗴 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲. We need at least 30 more individuals to participate in order to gain meaningful data insights that will help scientists deepen their understanding of NM and develop effective treatments. 𝗣𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗶𝗼𝗻 𝗶𝘀 𝘀𝗶𝗺𝗽𝗹𝗲: by registering with Citizen Health and providing the names of the doctors or medical groups who have treated you or your child, you can make a massive impact. Citizen Health will gather your records directly from these institutions. 𝗕𝘆 𝗼𝗽𝘁𝗶𝗻𝗴 𝗶𝗻 𝘁𝗼 𝘀𝗵𝗮𝗿𝗲 𝘆𝗼𝘂𝗿 𝗮𝗻𝗼𝗻𝘆𝗺𝗼𝘂𝘀, 𝗱𝗲-𝗶𝗱𝗲𝗻𝘁𝗶𝗳𝗶𝗲𝗱 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗶𝗻𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻, 𝘆𝗼𝘂𝗿 𝗱𝗮𝘁𝗮 𝗯𝗲𝗰𝗼𝗺𝗲𝘀 𝗮 𝗽𝗼𝘄𝗲𝗿𝗳𝘂𝗹 𝘁𝗼𝗼𝗹 𝘁𝗼 𝗮𝗱𝘃𝗮𝗻𝗰𝗲 𝗽𝗼𝘁𝗲𝗻𝘁𝗶𝗮𝗹 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁𝘀 𝘁𝗼 𝘁𝗵𝗲 𝗻𝗲𝘅𝘁 𝗽𝗵𝗮𝘀𝗲 𝗼𝗳 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝘁𝗿𝗶𝗮𝗹𝘀. As an added bonus, you'll gain access to your digital records through one central hub and access to Citizen Health’s 𝗔𝗜 𝗔𝗱𝘃𝗼𝗰𝗮𝘁𝗲, which helps you find answers to questions about your medical history quickly and accurately to help prepare for upcoming doctor visits. 𝗛𝗲𝗹𝗽 𝘂𝘀 𝗿𝗲𝗮𝗰𝗵 𝗼𝘂𝗿 𝗴𝗼𝗮𝗹 𝗮𝗻𝗱 𝗺𝗼𝘃𝗲 𝘁𝗵𝗲 𝘀𝗰𝗶𝗲𝗻𝗰𝗲 𝗳𝗼𝗿𝘄𝗮𝗿𝗱 𝘁𝗼𝗱𝗮𝘆! 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗡𝗼𝘄: https://www.citizen.health/ai-advocate/afbs (SEE LINK IN BIO!)