🎉 𝗧𝗢𝗗𝗔𝗬 𝗜𝗦 𝗡𝗠 𝗔𝗪𝗔𝗥𝗘𝗡𝗘𝗦𝗦 𝗗𝗔𝗬! 𝗠𝗮𝗸𝗲 𝗧𝗵𝗲𝘀𝗲 𝗙𝗶𝗻𝗮𝗹 𝗛𝗼𝘂𝗿𝘀 𝗼𝗳 𝘁𝗵𝗲 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 𝗖𝗢𝗨𝗡𝗧 𝗳𝗼𝗿 𝗡𝗠 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵! 🎉 Today, 𝗠𝗮𝘆 𝟯𝟭𝘀𝘁, is 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆 – a critical moment to shine a global spotlight on this rare neuromuscular disease! For individuals and families affected by NM, awareness means fostering understanding, accelerating research, and ultimately, 𝗯𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗮 𝗽𝗮𝘁𝗵 𝘁𝗼𝘄𝗮𝗿𝗱 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁𝘀. This past week, your incredible dedication during our 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 has helped 𝗔 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵 amplify this vital message, and we are so grateful for every share, every pledge, and every conversation you've sparked! 𝗪𝗲 𝗮𝗿𝗲 𝘀𝗼 𝗰𝗹𝗼𝘀𝗲 𝘁𝗼 𝗿𝗲𝗮𝗰𝗵𝗶𝗻𝗴 𝗼𝘂𝗿 𝗳𝘂𝗻𝗱𝗿𝗮𝗶𝘀𝗶𝗻𝗴 𝗴𝗼𝗮𝗹 𝗳𝗼𝗿 𝗰𝘂𝘁𝘁𝗶𝗻𝗴-𝗲𝗱𝗴𝗲 𝗡𝗠 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵! This is your 𝗙𝗜𝗡𝗔𝗟 𝗖𝗛𝗔𝗡𝗖𝗘 to make a powerful impact through the Share-A-Thon! 𝗠𝗲𝗲𝘁 𝘀𝗼𝗺𝗲 𝗼𝗳 𝘁𝗵𝗲 𝗶𝗻𝗰𝗿𝗲𝗱𝗶𝗯𝗹𝗲 𝗶𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝘀 𝘄𝗵𝗼𝘀𝗲 𝗹𝗶𝘃𝗲𝘀 𝗮𝗿𝗲 𝗱𝗶𝗿𝗲𝗰𝘁𝗹𝘆 𝗶𝗺𝗽𝗮𝗰𝘁𝗲𝗱 𝗯𝘆 𝘆𝗼𝘂𝗿 𝘀𝘂𝗽𝗽𝗼𝗿𝘁! Each of our featured fundraisers is sharing why advancing NM awareness and research matters so much to them. 𝗛𝗲𝗿𝗲'𝘀 𝗵𝗼𝘄 𝘁𝗼 𝗺𝗮𝗸𝗲 𝘁𝗵𝗲𝘀𝗲 𝗳𝗶𝗻𝗮𝗹 𝗵𝗼𝘂𝗿𝘀 𝘁𝗿𝘂𝗹𝘆 𝗰𝗼𝘂𝗻𝘁 𝗳𝗼𝗿 𝗡𝗠 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵: 𝗠𝗔𝗞𝗘 𝗬𝗢𝗨𝗥 𝗣𝗟𝗘𝗗𝗚𝗘 𝗢𝗥 𝗗𝗢𝗡𝗔𝗧𝗜𝗢𝗡 𝗡𝗢𝗪! Every dollar directly fuels groundbreaking Nemaline Myopathy research, providing crucial funding to advance scientific discovery. Visit: tinyurl.com/AFBSshare 𝗦𝗛𝗔𝗥𝗘, 𝗦𝗛𝗔𝗥𝗘, 𝗦𝗛𝗔𝗥𝗘! Remember, 𝗲𝘃𝗲𝗿𝘆 𝘀𝗶𝗻𝗴𝗹𝗲 𝘁𝗶𝗺𝗲 𝘆𝗼𝘂 𝘀𝗵𝗮𝗿𝗲, 𝘆𝗼𝘂'𝗿𝗲 𝗵𝗲𝗹𝗽𝗶𝗻𝗴 𝗳𝘂𝗻𝗱 𝗡𝗠 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵! Re-share this week's posts on your Facebook timeline and Instagram stories... and ask your friends to make a donation and share with their networks too! We'll be tallying all shares of our special daily Share-A-Thon posts as of 𝗺𝗶𝗱𝗻𝗶𝗴𝗵𝘁 𝗣𝗦𝗧 𝘁𝗼𝗻𝗶𝗴𝗵𝘁, 𝗦𝗮𝘁𝘂𝗿𝗱𝗮𝘆, 𝗠𝗮𝘆 𝟯𝟭𝘀𝘁! Your generous donations and the awareness you spread are instrumental in helping us achieve AFBS's driving mission of finding treatments for Nemaline Myopathy. 𝗟𝗲𝘁'𝘀 𝗺𝗮𝗸𝗲 𝘁𝗵𝗲𝘀𝗲 𝗳𝗶𝗻𝗮𝗹 𝗵𝗼𝘂𝗿𝘀 𝗼𝗳 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 𝗮𝗻𝗱 𝘁𝗵𝗲 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻 𝘁𝗿𝘂𝗹𝘆 𝗶𝗺𝗽𝗮𝗰𝘁𝗳𝘂𝗹! #NMAwarenessDay #NemalineMyopathy #RareDisease #AFBS #ShareAThon #FinalChance #Research #FundResearch #MakeADifference #LastPush #FacesOfNM #NemalineMyopathyAwareness (fb)

🧬 𝗗𝗮𝘆 𝟱: 𝗨𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗗𝗮𝗶𝗹𝘆 𝗖𝗵𝗮𝗹𝗹𝗲𝗻𝗴𝗲𝘀 𝗼𝗳 𝗕𝗿𝗲𝗮𝘁𝗵𝗶𝗻𝗴 & 𝗙𝗲𝗲𝗱𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆. 🧬 Welcome to Day 5 of the 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗦𝗵𝗮𝗿𝗲-𝗔-𝗧𝗵𝗼𝗻. Today, we're focusing on the significant 𝗯𝗿𝗲𝗮𝘁𝗵𝗶𝗻𝗴 𝗮𝗻𝗱 𝗳𝗲𝗲𝗱𝗶𝗻𝗴 𝗰𝗵𝗮𝗹𝗹𝗲𝗻𝗴𝗲𝘀 faced by many individuals living with Nemaline Myopathy (NM). Due to weakened respiratory muscles, even simple tasks like breathing can be a struggle. Some individuals require long-term respiratory support through a 𝘁𝗿𝗮𝗰𝗵𝗲𝗼𝘀𝘁𝗼𝗺𝘆 (trach), a surgical opening in the windpipe that helps simplify breathing and manage secretions. 𝗜𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗰𝗼𝗺𝗺𝗼𝗻 in individuals affected by NM and can become serious quickly. The 𝗶𝗻𝗮𝗯𝗶𝗹𝗶𝘁𝘆 𝘁𝗼 𝗰𝗼𝘂𝗴𝗵 𝗲𝗳𝗳𝗲𝗰𝘁𝗶𝘃𝗲𝗹𝘆 means that a common cold, something most of us brush off, can easily escalate into life-threatening pneumonia for those with NM. Specialized equipment to help break up lung congestion can be a lifeline, potentially preventing lengthy and frightening hospital stays. Feeding can also be a major hurdle. Swallowing difficulties often necessitate 𝗳𝗲𝗲𝗱𝗶𝗻𝗴 𝘁𝘂𝗯𝗲𝘀 to ensure individuals receive the nutrition and hydration they need safely. These may include a 𝗴-𝘁𝘂𝗯𝗲 (gastric tube), which connects directly to the stomach, or a 𝗷-𝘁𝘂𝗯𝗲 (jejunum tube), which connects to the small intestine. 𝗦𝘂𝗰𝘁𝗶𝗼𝗻 support is frequently required to manage saliva and prevent choking. Even those who can eat by mouth often find it incredibly tiring, making it difficult to consume enough calories or stay properly hydrated, leading to the need for supplemental tube feeding. For others, a feeding tube may be their primary source of nutrition. 𝗧𝗵𝗲𝘀𝗲 𝗱𝗮𝗶𝗹𝘆 𝗿𝗲𝗮𝗹𝗶𝘁𝗶𝗲𝘀 𝗵𝗶𝗴𝗵𝗹𝗶𝗴𝗵𝘁 𝘁𝗵𝗲 𝘂𝗿𝗴𝗲𝗻𝘁 𝗻𝗲𝗲𝗱 𝗳𝗼𝗿 𝗲𝗳𝗳𝗲𝗰𝘁𝗶𝘃𝗲 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁𝘀 𝗳𝗼𝗿 𝗡𝗠. 𝗛𝗢𝗪 𝗬𝗢𝗨 𝗖𝗔𝗡 𝗛𝗘𝗟𝗣 𝗧𝗢𝗗𝗔𝗬: 𝗠𝗔𝗞𝗘 𝗔 𝗣𝗟𝗘𝗗𝗚𝗘 𝗢𝗥 𝗗𝗢𝗡𝗔𝗧𝗜𝗢𝗡! Your support fuels the research that can change these realities. • Visit our Share-A-Thon page: tinyurl.com/AFBSshare • 𝗪𝗲'𝗿𝗲 𝗻𝗼𝘄 𝗺𝗼𝗿𝗲 𝘁𝗵𝗮𝗻 𝗵𝗮𝗹𝗳𝘄𝗮𝘆 𝘁𝗼 𝗼𝘂𝗿 𝗳𝘂𝗻𝗱𝗿𝗮𝗶𝘀𝗶𝗻𝗴 𝗴𝗼𝗮𝗹! Every pledge, big or small, makes a difference. 𝗦𝗛𝗔𝗥𝗘 𝗧𝗛𝗜𝗦 𝗣𝗢𝗦𝗧 & 𝗦𝗣𝗥𝗘𝗔𝗗 𝗧𝗛𝗘 𝗪𝗢𝗥𝗗! • Please 𝘀𝗵𝗮𝗿𝗲 𝘁𝗵𝗶𝘀 𝗼𝗻 𝘆𝗼𝘂𝗿 𝗙𝗮𝗰𝗲𝗯𝗼𝗼𝗸 𝘁𝗶𝗺𝗲𝗹𝗶𝗻𝗲 𝗮𝗻𝗱 𝘁𝗼 𝘆𝗼𝘂𝗿 𝗜𝗻𝘀𝘁𝗮𝗴𝗿𝗮𝗺 𝗦𝘁𝗼𝗿𝗶𝗲𝘀 to help others understand the daily battles faced by the NM community. • 𝗔𝘀𝗸 𝘆𝗼𝘂𝗿 𝗻𝗲𝘁𝘄𝗼𝗿𝗸 𝘁𝗼 𝗺𝗮𝗸𝗲 𝗮 𝗽𝗹𝗲𝗱𝗴𝗲 𝗮𝗻𝗱 𝘀𝗵𝗮𝗿𝗲 𝘁𝗼 𝗧𝗛𝗘𝗜𝗥 𝗳𝗿𝗶𝗲𝗻𝗱𝘀 𝗮𝘀 𝘄𝗲𝗹𝗹! • By sharing, you're raising crucial awareness and earning funds for vital research into treatments! Let's work together to bring hope and a brighter future to those living with Nemaline Myopathy. #NMAwarenessMonth #NemalineMyopathy #RareDisease #AFBS #ShareAThon #BreathingSupport #FeedingTube #Tracheostomy #DailyChallenges #Research #FundResearch (fb)