A Foundation Building Strength for Nemaline Myopathy

𝗧𝗵𝗲 𝟮𝟬𝟮𝟰 𝗖𝘂𝗿𝗲 𝗖𝗠𝗗 𝗖𝗿𝗲𝗮𝘁𝗶𝘃𝗲 𝗖𝗼𝗻𝘁𝗲𝘀𝘁 𝗶𝘀 𝗻𝗼𝘄 𝗼𝗽𝗲𝗻!

Returning for its fourth year, Cure CMD's Creative Contest is back, promoting creativity and exhibiting the unique gifts of our affected community. Artists aged 6 and up with a neuromuscular condition are invited to submit an original creation in any medium!

𝗧𝗶𝗺𝗲𝗹𝗶𝗻𝗲:

August 12: Contest opens

September 6: Last day to submit entries

September 8: Celebrating Art Week public voting begins

September 14: Public voting ends

October 1: Winners announced

Visit https://www.curecmd.org/creative-contest for more details!

CMD

𝗘𝘅𝗽𝗹𝗼𝗿𝗲 𝘁𝗵𝗲 𝗳𝗼𝗿𝗲𝗳𝗿𝗼𝗻𝘁 𝗼𝗳 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵! 🔬

Every publication on our "Research Publications" page represents researchers coming a step closer to finding treatments for NM. These cutting-edge discoveries, fueled by AFBS's support, are paving the way for a brighter future.

𝗖𝗵𝗲𝗰𝗸 𝗼𝘂𝘁 𝗼𝗻𝗲 𝗼𝗳 𝗼𝘂𝗿 𝗹𝗮𝘁𝗲𝘀𝘁 𝗽𝘂𝗯𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻𝘀 𝗻𝗼𝘄: "Characterization of NEB Mutations in Patients Reveals Novel Nemaline Myopathy Disease Mechanisms and Omecamtiv Mecarbil Force Effects." This groundbreaking research sheds new light on the complexity of NM and potential therapeutic avenues.

𝗩𝗶𝘀𝗶𝘁 𝗼𝘂𝗿 𝘄𝗲𝗯𝘀𝗶𝘁𝗲 𝘁𝗼 𝗱𝗶𝘃𝗲 𝗱𝗲𝗲𝗽𝗲𝗿 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝘀𝗰𝗶𝗲𝗻𝗰𝗲 𝗮𝗻𝗱 𝘀𝘁𝗮𝘆 𝗶𝗻𝗳𝗼𝗿𝗺𝗲𝗱 𝗮𝗯𝗼𝘂𝘁 𝘁𝗵𝗲 𝗹𝗮𝘁𝗲𝘀𝘁 𝗯𝗿𝗲𝗮𝗸𝘁𝗵𝗿𝗼𝘂𝗴𝗵𝘀: https://buildingstrength.org/research/publications/

𝟰𝟮 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝘀𝘁𝘂𝗱𝗶𝗲𝘀 𝗳𝘂𝗻𝗱𝗲𝗱. 𝗖𝗼𝘂𝗻𝘁𝗹𝗲𝘀𝘀 𝗹𝗶𝘃𝗲𝘀 𝘁𝗼𝘂𝗰𝗵𝗲𝗱. At AFBS, we're funding groundbreaking research, supporting families, and building a stronger NM community. Thanks to our individual and corporate philanthropic partners, AFBS is making a real difference.

𝗪𝗶𝘁𝗵 𝘆𝗼𝘂𝗿 𝗵𝗲𝗹𝗽, 𝘄𝗲 𝗰𝗮𝗻 𝗵𝗮𝘃𝗲 𝗮𝗻 𝗲𝘃𝗲𝗻 𝗴𝗿𝗲𝗮𝘁𝗲𝗿 𝗶𝗺𝗽𝗮𝗰𝘁! Do you know someone who may want to establish an individual or corporate philanthropic partnership with A Foundation Building Strength?

𝗗𝗼𝘄𝗻𝗹𝗼𝗮𝗱 𝗮𝗻𝗱 𝘀𝗵𝗮𝗿𝗲 𝗼𝘂𝗿 𝗻𝗲𝘄 𝗣𝗵𝗶𝗹𝗮𝗻𝘁𝗵𝗿𝗼𝗽𝗶𝗰 𝗣𝗮𝗿𝘁𝗻𝗲𝗿𝘀𝗵𝗶𝗽 𝗣𝗮𝗰𝗸𝗲𝘁: Help others discover how they can make a transformative impact and be part of history in the making: https://buildingstrength.org/philanthropic-partnerships/

𝗬𝗼𝘂 𝗰𝗮𝗻 𝗵𝗲𝗹𝗽 𝗰𝗵𝗮𝗻𝗴𝗲 𝘁𝗵𝗲 𝗰𝗼𝘂𝗿𝘀𝗲 𝗼𝗳 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆.

Leticia and Guilherme, parents of 5-year-old Ceci, understand the power of unity in the fight against Nemaline Myopathy. 🤝

They joined the CMDIR, recognizing that together, we can make a difference that's impossible alone.

Every NM diagnosis shared with the CMDIR adds another piece to the puzzle, helping researchers see the full picture and accelerate the search for treatments!

Join the movement. 💪 Register with the CMDIR today (https://www.cmdir.org/) and contribute to a brighter future for the NM community.

*Need help getting registered? AFBS has a dedicated staff standing by to lead you through the process! Fill out this short form to request assistance: https://forms.gle/ZzMH1Gnc4oXJksNK8

𝗪𝗵𝘆 𝗚𝗲𝘁 𝗚𝗲𝗻𝗲𝘁𝗶𝗰 𝗧𝗲𝘀𝘁𝗶𝗻𝗴 𝗶𝗳 𝗬𝗼𝘂 𝗔𝗹𝗿𝗲𝗮𝗱𝘆 𝗛𝗮𝘃𝗲 𝗮𝗻 𝗡𝗠 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀? 🤔

It's a great question! Even with a confirmed Nemaline Myopathy (NM) diagnosis, there's still valuable information to be gained from genetic testing. Here's why:

- 𝗢𝗽𝘁𝗶𝗺𝗶𝘇𝗲𝗱 𝗖𝗮𝗿𝗲: : NM is caused by mutations in at least 12 different genes, and presents with varying degrees of muscle weakness from very mild to severe. Knowing your specific genetic variant can help you and your medical team schedule the right follow-ups with the right specialists and tailor your care plan to your specific needs.

- 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗢𝗽𝗽𝗼𝗿𝘁𝘂𝗻𝗶𝘁𝗶𝗲𝘀: Identifying your specific genetic variant opens doors to participate in research studies that are focused on your particular type of NM. This could lead to new treatment options and breakthroughs.

- 𝗙𝗮𝗺𝗶𝗹𝘆 𝗣𝗹𝗮𝗻𝗻𝗶𝗻𝗴: Understanding your genetic makeup helps you and your extended family make informed decisions about family planning and assess the risk of passing NM on to future generations.

- 𝗖𝗹𝗲𝗮𝗿 𝗔𝗻𝘀𝘄𝗲𝗿𝘀: Genetic confirmation is the gold standard for an accurate neuromuscular disease diagnosis, eliminating the risk of misdiagnosis and revealing the true cause of your symptoms. This knowledge allows you to differentiate symptoms caused by your specific subtype of NM from those caused by other conditions, ensuring you receive the most effective and personalized treatment for all of your health concerns.

- 𝗕𝗲 𝗮 𝗣𝗮𝗿𝘁 𝗼𝗳 𝘁𝗵𝗲 𝗦𝗼𝗹𝘂𝘁𝗶𝗼𝗻: Your genetic test not only provides answers for you but also contributes essential data to the global effort to understand, treat, and ultimately cure neuromuscular diseases for future generations.

𝗪𝗲'𝗿𝗲 𝗵𝗲𝗿𝗲 𝘁𝗼 𝗵𝗲𝗹𝗽! Through the Detect MD Program, you can access no-cost genetic confirmation testing. Just fill out this short assistance request form (https://forms.gle/ipTQdeeiGKQVpzPQ9) and a dedicated member of our staff will reach out to assist you! 🧬

𝙏𝙖𝙠𝙚 𝙩𝙝𝙚 𝙣𝙚𝙭𝙩 𝙨𝙩𝙚𝙥 𝙞𝙣 𝙪𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙𝙞𝙣𝙜 𝙮𝙤𝙪𝙧 𝙉𝙈 𝙟𝙤𝙪𝙧𝙣𝙚𝙮. Learn more and get started today!

Looking for a way to show your support for the Nemaline Myopathy community? Look no further than the new AFBS Online Shop! 🛍️👕

We've got stylish and comfortable apparel for the whole family, featuring NM-themed designs and AFBS branding. Every purchase helps fund groundbreaking research that brings us closer to treatments and therapies for NM.

Shop now and wear your support proudly! 💖💪

https://shop.buildingstrength.org/ (SHOP IN BIO!)

To the incredible parents and caretakers in our Nemaline Myopathy community,

Today, on Parent Appreciation Day, we celebrate YOU. Your love, strength, and unwavering dedication to your children and loved ones facing the challenges of NM are a constant inspiration. ❤️

We see you. We see the early mornings, the late nights, the endless appointments, the tireless advocacy, and the moments of quiet worry. But we also see the laughter, the joy, the celebrations of small victories, and the unbreakable bonds you've forged.

You are the heart of our NM community, the foundation upon which your loved ones build their strength. Your love and support are the greatest gifts they could ask for.

We are so grateful for you. Thank you for all that you do.

Happy Parent Appreciation Day!

𝗖𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗶𝗻𝗴 𝗮 𝗠𝗶𝗹𝗲𝘀𝘁𝗼𝗻𝗲 𝗶𝗻 𝗡𝗠 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵! 🎉

💪🏼 Thanks to YOUR incredible support and participation, we've seen an 𝟴% 𝗶𝗻𝗰𝗿𝗲𝗮𝘀𝗲 in Nemaline Myopathy (NM) patient registration with the Congenital Muscle Disease International Registry (CMDIR)! This means researchers all over the world are getting invaluable data to understand NM better and accelerate development of possible treatments. 🙌🏼

𝗪𝗵𝘆 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝘄𝗶𝘁𝗵 𝘁𝗵𝗲 𝗖𝗠𝗗𝗜𝗥?
- Share your medical data to fuel NM research. 🔬
- Contribute to a clearer picture of this rare disease. 📊
- Help researchers develop targeted treatments FASTER. 🏃‍♀️💨
- Make your voice heard in future clinical trials. 🗣️
- Be a part of the movement towards a brighter future for the NM community. 💫

𝗘𝘃𝗲𝗿𝘆 𝗥𝗲𝗴𝗶𝘀𝘁𝗿𝗮𝘁𝗶𝗼𝗻 𝗖𝗼𝘂𝗻𝘁𝘀! ✨ If you're living with NM and haven't registered yet, please consider doing so today at https://www.cmdir.org/. Your data is a powerful tool in our quest to find treatments and therapies for this disease.

Need help getting registered? AFBS has a dedicated staff standing by to lead you through the process! Fill out this short form to request assistance: https://forms.gle/ZzMH1Gnc4oXJksNK8

Together, we can make a difference! 💙

Connect with A Foundation Building Strength (AFBS) on LinkedIn and make a difference!

💪 Your connection helps amplify our mission to support groundbreaking research for the rare neuromuscular disease, Nemaline Myopathy.

🔬 Stay informed about the latest scientific breakthroughs and promising treatments.

🤝 Join a community of passionate advocates, researchers, and industry leaders dedicated to improving the lives of those affected by this disease.

📢 Share our posts and stories to raise awareness and attract the attention of potential major donors, corporate partners, and pharmaceutical/biotech companies who can accelerate progress towards treatments.

Together, we can build a stronger future for those affected by this neuromuscular disease.

Follow us on LinkedIn today! https://www.linkedin.com/company/afoundation-building-strength

𝗘𝘅𝗰𝗶𝘁𝗶𝗻𝗴 𝗕𝗿𝗲𝗮𝗸𝘁𝗵𝗿𝗼𝘂𝗴𝗵𝘀 𝗶𝗻 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵!

Dr. Vandana Gupta and her team at Brigham & Women's Hospital () , supported by A Foundation Building Strength (AFBS), are making promising strides in the search for treatments for NM.

After successfully developing mouse & zebrafish models of NM causing Kelch Genes (KLHL40, KLHL41 and KBTBD13), Dr .Gupta's team is now working on developing gene therapy & small molecule (drug) therapy for the rare forms of NM caused by mutations in these genes.

𝗪𝗵𝗮𝘁'𝘀 𝘁𝗵𝗲 𝗕𝗶𝗴 𝗡𝗲𝘄𝘀?

🧬 𝗚𝗲𝗻𝗲 𝗥𝗲𝗽𝗹𝗮𝗰𝗲𝗺𝗲𝗻𝘁 𝗧𝗵𝗲𝗿𝗮𝗽𝘆: Early results from gene replacement therapy in mice with severe NM showed improvement in the lifespan and muscle function warranting further study.

💊 𝗗𝗿𝘂𝗴 𝗥𝗲𝗽𝘂𝗿𝗽𝗼𝘀𝗶𝗻𝗴: After testing hundreds of FDA-approved drugs on zebrafish with NM, they've identified 16 promising drug candidates, laying the groundwork for further investigation of their therapeutic potential.

𝗪𝗵𝗮𝘁 𝗗𝗼𝗲𝘀 𝗧𝗵𝗶𝘀 𝗠𝗲𝗮𝗻 𝗳𝗼𝗿 𝗡𝗠 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀?

These findings bring us closer to effective treatments for NM. While more research is needed, Dr. Gupta's team is paving the way for a brighter future for those affected by this rare disease.

𝗦𝘁𝗮𝘆 𝗧𝘂𝗻𝗲𝗱:

Follow us for more updates on this groundbreaking research. We'll keep you informed as Dr. Gupta and her team continue to push the boundaries of NM research.

📣 𝗡𝗘𝗪: 𝗯𝘆 𝗽𝗼𝗽𝘂𝗹𝗮𝗿 𝗱𝗲𝗺𝗮𝗻𝗱, 𝘁𝗵𝗲 𝗔𝗙𝗕𝗦 𝗢𝗻𝗹𝗶𝗻𝗲 𝗦𝗵𝗼𝗽 𝗻𝗼𝘄 𝗵𝗮𝘀 𝘁𝗼𝗱𝗱𝗹𝗲𝗿 𝗮𝗻𝗱 𝗯𝗮𝗯𝘆 𝘀𝗶𝘇𝗲𝘀!📣

Dress your little ones in gear that shows their strength and helps support critical research into treatments and therapies for NM. 🔬 Every purchase brings us closer to a brighter future! ✨

Head to the online shop and grab your family's new favorites today! 🛍️💪👶

𝗦𝗛𝗢𝗣 𝗡𝗢𝗪: https://shop.buildingstrength.org/

📣 ¡𝗔𝘁𝗲𝗻𝗰𝗶𝗼́𝗻 𝗰𝗼𝗺𝘂𝗻𝗶𝗱𝗮𝗱 𝗵𝗶𝘀𝗽𝗮𝗻𝗼𝗵𝗮𝗯𝗹𝗮𝗻𝘁𝗲! 📣

A Foundation Building Strength se enorgullece en anunciar que nuestro Recurso Kit sobre Miopatía Nemalínica ahora está disponible en ESPAÑOL. 🇪🇸

Este recurso integral fue creado para empoderar a familias e individuos afectados por la Miopatía Nemalínica. ¡Ahora, aún más personas podrán acceder a información vital y apoyo en su propio idioma! 💪

𝗗𝗲𝘀𝗰𝗮𝗿𝗴𝗮𝗿 𝗔𝗵𝗼𝗿𝗮: https://buildingstrength.org/wp-content/uploads/sites/542/2024/07/NM-Resource-Toolkit-SPANISH_REV070824.pdf

¡Compartan esta noticia y ayúdennos a llegar a cada rincón de nuestra
comunidad! 🌎
__

A Foundation Building Strength is proud to announce that our Nemaline Myopathy Resource Kit is now available in SPANISH. 🇪🇸

This comprehensive resource was created to empower families and individuals affected by Nemaline Myopathy. Now, even more people will be able to access vital information and support in their own language! 💪

Download Now: https://buildingstrength.org/wp-content/uploads/sites/542/2024/07/NM-Resource-Toolkit-SPANISH_REV070824.pdf

Share this news and help us reach every corner of our community!

🎉🙌 𝗔 𝗛𝗨𝗚𝗘 𝗧𝗛𝗔𝗡𝗞 𝗬𝗢𝗨 𝘁𝗼 𝗼𝘂𝗿 𝗮𝗺𝗮𝘇𝗶𝗻𝗴 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆! 🎉🙌

We are so incredibly grateful for your amazing support during our first-ever Nemaline Myopathy Awareness Month this past May! Together, we reached nearly 14,000 people worldwide and spread awareness about NM like never before. Your shares, stories, and enthusiasm truly made a difference! 💖

𝗬𝗼𝘂𝗿 𝗜𝗺𝗽𝗮𝗰𝘁:
-𝗢𝘃𝗲𝗿 𝟰𝟬𝟬 𝗦𝗵𝗮𝗿𝗲𝘀: You shared our messages across social media, amplifying the voices of our community and spreading awareness of Nemaline Myopathy (NM).
-𝗦𝘁𝘆𝗹𝗶𝘀𝗵 𝗦𝘂𝗽𝗽𝗼𝗿𝘁: You rocked our new AFBS & NM apparel with pride, sparking conversations and raising awareness wherever you went.
-𝗚𝗲𝗻𝗲𝗿𝗼𝘂𝘀 𝗙𝘂𝗻𝗱𝗿𝗮𝗶𝘀𝗶𝗻𝗴: Your fundraising efforts have made a REAL difference, fueling research and support for those living with NM.
-𝗦𝗽𝗿𝗲𝗮𝗱𝗶𝗻𝗴 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀: You distributed hundreds of our new NM Awareness Packets! ✉️
-𝗣𝗼𝘄𝗲𝗿𝗳𝘂𝗹 𝗦𝘁𝗼𝗿𝗶𝗲𝘀: Our brave community members shared their personal journeys with NM, inspiring and educating us all.

From rocking our new AFBS merch to sharing inspiring stories and hosting fundraisers, your dedication was incredible. We were so moved by the outpouring of support from our community and beyond.🙏

As we look forward to next year's celebration, we want to hear from YOU! What did you love most about this year's awareness efforts? What could we have done better? What topics would you like us to explore next year? We value your feedback and want to make next year's NM Awareness Month even more impactful.

𝙋𝙡𝙚𝙖𝙨𝙚 𝙩𝙖𝙠𝙚 𝙖 𝙛𝙚𝙬 𝙢𝙞𝙣𝙪𝙩𝙚𝙨 𝙩𝙤 𝙛𝙞𝙡𝙡 𝙤𝙪𝙩 𝙤𝙪𝙧 𝙨𝙝𝙤𝙧𝙩 𝙨𝙪𝙧𝙫𝙚𝙮 𝙖𝙣𝙙 𝙨𝙝𝙖𝙧𝙚 𝙮𝙤𝙪𝙧 𝙩𝙝𝙤𝙪𝙜𝙝𝙩𝙨: https://forms.gle/iKMZjRcAr5w4QaTaA

Together, we can continue to raise awareness, educate, and inspire action around Nemaline Myopathy! 💪

AFBS was honored to be invited to the 277th ENMC(European Neuromuscular Centre) workshop in the Netherlands last week, where founder Marc Guillet joined a global network of experts in the field of congenital myopathies. 💪

Led by Dr. J. Dowling (Canada), Dr. C. Bönnemann (USA), Dr. E. Oates (Australia), and Dr. A. Ferreiro (France), discussions focused on refining the nomenclature and diagnostic guidelines for these rare neuromuscular disorders. 🔬

International collaboration like this is essential for accelerating research and finding new treatments for the millions affected by these debilitating conditions. Together, we're stronger! 🌍

🎉 𝗛𝘂𝗴𝗲 𝗡𝗲𝘄𝘀 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗡𝗠 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆! 🎉

AFBS is thrilled to announce a major expansion in Nemaline Myopathy (NM) research with the launch of the Beggs Lab NM Biobanking Program at Boston Children’s Hospital! 🧬🔬

This groundbreaking initiative is set to revolutionize our understanding of NM, paving the way for new treatments and ultimately, a brighter future for those living with this condition. 💪

𝗪𝗵𝗮𝘁 𝗺𝗮𝗸𝗲𝘀 𝘁𝗵𝗶𝘀 𝗽𝗿𝗼𝗴𝗿𝗮𝗺 𝘀𝗼 𝗲𝘅𝗰𝗶𝘁𝗶𝗻𝗴?

- It empowers patients and families to directly contribute to NM research through tissue and DNA donation.
- It offers FREE genetic testing to participants who haven't received a confirmed diagnosis.
- It removes financial barriers, making participation accessible to everyone in the NM community.

Want to learn more about how you can be a part of this life-changing research?

👉 Read our blog post for all the details! https://buildingstrength.org/blog/nm-biobanking-program/

💪 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆: Take charge of your health! 🔍 If you haven't received a genetic confirmation of your NM diagnosis, now is the time! Detect Muscular Dystrophy offers 𝗙𝗥𝗘𝗘 𝗴𝗲𝗻𝗲𝘁𝗶𝗰 𝘁𝗲𝘀𝘁𝗶𝗻𝗴 for those in the US who are suspected of having Nemaline Myopathy. 🧬

Early and accurate diagnosis can make a world of difference in your journey. Don't miss out on this opportunity to better understand your condition and access the resources you need.

✅ No referral needed
✅ No insurance required
✅ Easy blood draw through your doctor
✅ Results delivered to your physician

Visit our link and fill out the quick contact form to get started!
👉 https://forms.gle/RXmrz3CFi3rUWKPk6

🎉 𝗙𝗥𝗘𝗘 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗣𝗮𝗰𝗸𝗲𝘁𝘀 𝗦𝘁𝗶𝗹𝗹 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲! 🎉

Did you miss out on our NM Awareness Month giveaway? No worries! Our FREE NM Awareness Packets are still up for grabs! 🤩

Each packet includes:

* An informative card with quick facts about Nemaline Myopathy (NM) and the amazing work A Foundation Building Strength (AFBS) is doing to advance research for potential treatments.
* A fun collection of stickers to show your NM pride!

𝗛𝗼𝘄 𝘁𝗼 𝗴𝗲𝘁 𝘆𝗼𝘂𝗿 𝗙𝗥𝗘𝗘 𝗽𝗮𝗰𝗸𝗲𝘁𝘀:

1. Set up your personal online fundraising page for AFBS (https://www.classy.org/campaign/nemaline-myopathy-awareness-day/c570018).
2. Complete a quick request form (https://forms.gle/45Fz724nVveGj5KM9).
3. Share your packets with friends, family, coworkers, or anyone who wants to learn more about NM!

These packets are perfect for:

* Raising awareness about NM in your community all year round.
* Encouraging donations to AFBS research initiatives through the convenient QR code.
* Adding a touch of NM awareness to your fundraising efforts.

𝗗𝗼𝗻'𝘁 𝗳𝗼𝗿𝗴𝗲𝘁: You can still create your NM Awareness fundraising page and earn fun AFBS swag based on the amount you raise!

💪 Let's keep the NM awareness momentum going! Order your FREE packets today and spread the word! 💪

𝗪𝗛𝗬 𝗜 𝗝𝗢𝗜𝗡𝗘𝗗: 𝗞𝗔𝗧𝗘

📢 𝗖𝗮𝗹𝗹𝗶𝗻𝗴 𝗮𝗹𝗹 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 (𝗡𝗠) 𝘄𝗮𝗿𝗿𝗶𝗼𝗿𝘀! 📢

Your voice and your story matter. Every challenge, every triumph, every detail of your NM journey can help researchers unlock the mysteries of this rare condition and pave the way to potential treatments.

𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗖𝗼𝗻𝗴𝗲𝗻𝗶𝘁𝗮𝗹 𝗠𝘂𝘀𝗰𝗹𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗥𝗲𝗴𝗶𝘀𝘁𝗿𝘆 (𝗖𝗠𝗗𝗜𝗥) 𝘁𝗼𝗱𝗮𝘆 𝗮𝗻𝗱 𝗯𝗲𝗰𝗼𝗺𝗲 𝗮 𝗽𝗮𝗿𝘁 𝗼𝗳 𝘁𝗵𝗲 𝘀𝗼𝗹𝘂𝘁𝗶𝗼𝗻!

💪 𝗪𝗵𝘆 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿? 💪

* 𝗘𝗺𝗽𝗼𝘄𝗲𝗿 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵: Your data helps researchers better understand NM, its progression, and the unique challenges faced by the community.

* 𝗗𝗿𝗶𝘃𝗲 𝗱𝗶𝘀𝗰𝗼𝘃𝗲𝗿𝘆: Your participation could accelerate the development of new therapies and improve the lives of individuals with NM worldwide.

𝗞𝗮𝘁𝗲, a member of our NM community, shares:

"𝙄 𝙟𝙤𝙞𝙣𝙚𝙙 𝙩𝙝𝙚 𝘾𝙈𝘿𝙄𝙍 𝙗𝙚𝙘𝙖𝙪𝙨𝙚 𝙚𝙫𝙚𝙧𝙮 𝙙𝙚𝙩𝙖𝙞𝙡 𝙤𝙛 𝙢𝙮 𝙟𝙤𝙪𝙧𝙣𝙚𝙮 𝙢𝙖𝙩𝙩𝙚𝙧𝙨. 𝙁𝙧𝙤𝙢 𝙙𝙞𝙖𝙜𝙣𝙤𝙨𝙞𝙨 𝙩𝙤 𝙙𝙖𝙞𝙡𝙮 𝙨𝙩𝙧𝙪𝙜𝙜𝙡𝙚𝙨, 𝙨𝙝𝙖𝙧𝙞𝙣𝙜 𝙢𝙮 𝙨𝙩𝙤𝙧𝙮 𝙘𝙖𝙣 𝙝𝙚𝙡𝙥 𝙧𝙚𝙨𝙚𝙖𝙧𝙘𝙝𝙚𝙧𝙨 𝙪𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙 𝙉𝙈 𝙗𝙚𝙩𝙩𝙚𝙧."

Your voice matters too! Let's join Kate and show the world the strength of the NM community.

✅ 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗶𝗻𝗴 𝗶𝘀 𝗲𝗮𝘀𝘆: Visit CMDIR.org and create an account. Share a few basic details and choose how much information you'd like to share.

🤝 𝗡𝗲𝗲𝗱 𝗵𝗲𝗹𝗽? We're here for you! Fill out this short online form (https://forms.gle/xKhwwhRCt3C7qkzKA) and a dedicated staff member will guide you through the process.

Let's make a difference together!

📢 𝗘𝘅𝗰𝗶𝘁𝗶𝗻𝗴 𝗡𝗲𝘄𝘀! We are thrilled to announce the formation of the new AFBS Scientific Advisory Board, a team of brilliant minds lending their knowledge and guidance to help AFBS plot our course towards developing treatments and therapies for Nemaline Myopathy. 🌟

This esteemed group, led by Co-Chairs Drs. Alan Beggs and Gina Ravenscroft, brings together expertise in genetics, neuromuscular diseases, clinical research, and patient advocacy. Their knowledge and guidance will be instrumental in accelerating our progress towards a brighter future for the NM community. 💪

Meet the incredible individuals on our Scientific Advisory Board:

- Dr. Alan Beggs (Boston Children's Hospital & Harvard University)
- Dr. Gina Ravenscroft (Harry Perkins Institute of Medical Research)
- Dr. Lindsay Alfano (Nationwide Children's Hospital & Ohio State University)
- Dr. A. Reghan Foley (NINDS, National Institutes of Health)
- Adrian Gomez (Ramboll)
- Lucinda Lee (University of North Carolina)
- Dr. Coen Ottenheijm (Amsterdam UMC & University of Arizona)
- Wayne Sackett (Estuary Biotherapeutics)
- Dr. Nicol Voermans (Radboud University Medical Center)

To learn more about their remarkable backgrounds and contributions, visit our website: https://buildingstrength.org/afbs-scientific-advisory-board/

Together, we can build a brighter future for those living with Nemaline Myopathy! 💙

🙌 𝗔 𝗛𝗨𝗚𝗘 𝗧𝗛𝗔𝗡𝗞 𝗬𝗢𝗨 𝗳𝗼𝗿 𝗮𝗻 𝗶𝗻𝗰𝗿𝗲𝗱𝗶𝗯𝗹𝗲 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵! 🙌

Your support, stories, and enthusiasm have made this first-ever celebration a huge success! 🎉

We're so grateful to everyone who:

- 𝗦𝗽𝗿𝗲𝗮𝗱 𝗮𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀: You shared posts, started conversations, and helped shine a spotlight on this rare disease.
- 𝗥𝗮𝗶𝘀𝗲𝗱 𝗳𝘂𝗻𝗱𝘀: Your donations are fueling groundbreaking research that brings us closer to treatments and therapies for NM.
- 𝗦𝗵𝗼𝘄𝗲𝗱 𝘆𝗼𝘂𝗿 𝘀𝘂𝗽𝗽𝗼𝗿𝘁: Whether through events, merchandise purchases, or simply spreading the word, your contributions mean the world.
- 𝗦𝗵𝗮𝗿𝗲𝗱 𝘆𝗼𝘂𝗿 𝘀𝘁𝗼𝗿𝗶𝗲𝘀: The "Faces of NM" series wouldn't have been possible without your willingness to share your experiences.

𝗧𝗵𝗲 "𝗙𝗮𝗰𝗲𝘀 𝗼𝗳 𝗡𝗠" 𝘀𝗲𝗿𝗶𝗲𝘀 𝘄𝗶𝗹𝗹 𝗰𝗼𝗻𝘁𝗶𝗻𝘂𝗲! We received so many inspiring stories that we'll be featuring even more throughout the year. Want to be part of it? Fill out our questionnaire and share your unique perspective: https://forms.gle/ZoXRBJqxRUC2PXsC9

𝗟𝗲𝘁'𝘀 𝗸𝗲𝗲𝗽 𝘁𝗵𝗲 𝗺𝗼𝗺𝗲𝗻𝘁𝘂𝗺 𝗴𝗼𝗶𝗻𝗴! NM awareness doesn't end with May.

- 𝗚𝗲𝘁 𝘆𝗼𝘂𝗿 𝗙𝗥𝗘𝗘 𝗡𝗠 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗣𝗮𝗰𝗸𝗲𝘁𝘀: Share facts and show your support with these fun stickers and informative cards: https://forms.gle/QsMz5RWo1ifZUyYdA

- 𝗙𝗼𝗹𝗹𝗼𝘄 𝘂𝘀 𝗼𝗻 𝘀𝗼𝗰𝗶𝗮𝗹 𝗺𝗲𝗱𝗶𝗮: Stay up-to-date on resources, research, and community events. Follow us on Instagram () and Facebook ()!

Thank you for being part of this amazing journey. Together, we're building a stronger future for everyone affected by NM! 💪💜

𝗠𝗬𝗧𝗛 𝗕𝗨𝗦𝗧𝗘𝗗: 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗶𝘀 𝘁𝗵𝗲 𝗦𝗮𝗺𝗲 𝗳𝗼𝗿 𝗘𝘃𝗲𝗿𝘆𝗼𝗻𝗲 🙅‍♂️🙅‍♀️

𝗠𝗬𝗧𝗛: NM affects everyone the same way.

𝗙𝗔𝗖𝗧: NM is NOT a one-size-fits-all condition. It has different types and subtypes, each with a spectrum of severity.

𝗠𝗮𝘀𝗼𝗻 moves a little slower than his peers. 𝗦𝗰𝗮𝗿𝗹𝗲𝘁𝘁 depends on a G-Tube for nutrition and water. 𝗡𝗶𝗰𝗼𝗹𝗲 has difficulty walking long distances and lifting. 𝗝𝗮𝗸𝘀𝗼𝗻 communicates via an eye gaze computer. They all have NM, but their journeys are unique.

Today is 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆! Let's celebrate the diverse experiences of the NM community and debunk this common misconception.

𝗔 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵 is dedicated to researching all forms of NM and finding personalized treatments for everyone affected.

𝗪𝗮𝗻𝘁 𝘁𝗼 𝗵𝗲𝗹𝗽?

1. 𝗦𝗛𝗔𝗥𝗘 this post and spread awareness.

2. 𝗗𝗢𝗡𝗔𝗧𝗘 to our virtual Nemaline Myopathy Awareness fundraiser and invest in research that could change lives. (https://www.classy.org/campaign/nemaline-myopathy-awareness-day/c570018)

3. 𝗟𝗘𝗔𝗥𝗡 𝗠𝗢𝗥𝗘 about the different types of NM and how they affect individuals differently at https://buildingstrength.org/

Together, we can create a world where everyone with NM receives the support and care they need.

𝗙𝗮𝘀𝘁 𝗙𝗮𝗰𝘁𝘀 𝗔𝗯𝗼𝘂𝘁 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆: 𝗛𝗼𝘄 𝗥𝗮𝗿𝗲 𝗜𝘀 𝗜𝘁? 🔍

Did you know Nemaline Myopathy (NM) is considered a rare disease? It's estimated to affect less than 1 in 50,000 people.

This rarity makes it challenging to attract research funding from pharmaceutical and biotech companies, which is why organizations like 𝗔 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵 are so crucial! 💪 AFBS currently funds research initiatives all over the world!

Here are some key facts about NM's prevalence:

𝗥𝗮𝗿𝗲 𝗯𝘂𝘁 𝗶𝗺𝗽𝗮𝗰𝘁𝗳𝘂𝗹: NM affects fewer people than more common conditions, but its impact on individuals and families is significant.

𝗠𝘂𝘀𝗰𝗹𝗲 𝘄𝗲𝗮𝗸𝗻𝗲𝘀𝘀 𝘃𝗮𝗿𝗶𝗲𝘀: While NM causes muscle weakness throughout the body, the face, neck, and limbs are typically most affected. This means that NM can affect mobility, speech, breathing, and the ability to swallow.

𝗦𝗲𝘃𝗲𝗿𝗮𝗹 𝘀𝘂𝗯𝘁𝘆𝗽𝗲𝘀 𝗲𝘅𝗶𝘀𝘁: NM isn't a one-size-fits-all condition. There are different subtypes caused by mutations in different genes with varying severity of symptoms.

𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗶𝘀 𝗲𝘀𝘀𝗲𝗻𝘁𝗶𝗮𝗹: Finding effective treatments requires dedicated research efforts, and your support can make a real difference.

Today is 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆! Let's raise our voices and spread the word about this rare disease.

Want to dive deeper?

-Head to our website for more info: https://buildingstrength.org/
-𝗦𝗵𝗮𝗿𝗲 these facts with your friends and family.
-𝗗𝗼𝗻𝗮𝘁𝗲 to our fundraiser to empower research and drive progress: https://www.classy.org/campaign/nemaline-myopathy-awareness-day/c570018

Together, we can make a difference for the NM community. Every dollar counts! 💙

𝗠𝗬𝗧𝗛 𝗕𝗨𝗦𝗧𝗘𝗗: 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗮𝗻𝗱 𝗮 "𝗡𝗼𝗿𝗺𝗮𝗹 𝗟𝗶𝗳𝗲" 💪🌍

𝗠𝗬𝗧𝗛: People with Nemaline Myopathy (NM) can't live fulfilling lives.

𝗙𝗔𝗖𝗧: NM presents unique challenges, but it DOESN'T define a person's potential for happiness, success, and meaningful relationships.

Today is 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆! Let's celebrate the incredible resilience of the NM community and shatter this harmful misconception.

Enilton travels the world. Jackson loves hanging out with his friends and gaming. Nicole is a successful business woman. Harneet is an academic achiever. They're all thriving despite living with the challenges of NM.

𝗪𝗮𝗻𝘁 𝘁𝗼 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 𝘁𝗵𝗲 𝗡𝗠 𝗰𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆?

1. 𝗦𝗛𝗔𝗥𝗘 this post and challenge stereotypes.

2. 𝗗𝗢𝗡𝗔𝗧𝗘 to our virtual fundraiser and invest in research that could change lives. (https://www.classy.org/campaign/nemaline-myopathy-awareness-day/c570018)

2. 𝗟𝗘𝗔𝗥𝗡 𝗠𝗢𝗥𝗘 about NM and the extraordinary people who live with it.

𝗔 𝗙𝗼𝘂𝗻𝗱𝗮𝘁𝗶𝗼𝗻 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗦𝘁𝗿𝗲𝗻𝗴𝘁𝗵 is committed to finding treatments for NM, so everyone can live their best lives. 𝗧𝗼𝗴𝗲𝘁𝗵𝗲𝗿, 𝘄𝗲 𝗰𝗮𝗻 𝗯𝘂𝗶𝗹𝗱 𝗮 𝘀𝘁𝗿𝗼𝗻𝗴𝗲𝗿 𝗳𝘂𝘁𝘂𝗿𝗲 𝗳𝗼𝗿 𝗲𝘃𝗲𝗿𝘆𝗼𝗻𝗲 𝗮𝗳𝗳𝗲𝗰𝘁𝗲𝗱 𝗯𝘆 𝗡𝗠.

🌎 𝗙𝗔𝗖𝗘𝗦 𝗢𝗙 𝗡𝗠: 𝗠𝗲𝗲𝘁 𝗘𝗻𝗶𝗹𝘁𝗼𝗻, 𝗔 𝗪𝗼𝗿𝗹𝗱 𝗧𝗿𝗮𝘃𝗲𝗹𝗲𝗿 𝘄𝗶𝘁𝗵 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆! 🌎

Today is 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆, and we're thrilled to introduce you to an extraordinary member of our community: 𝗘𝗻𝗶𝗹𝘁𝗼𝗻 𝗡𝗲𝘆𝗺𝗮𝗸𝗲𝘀 𝗠𝗼𝗿𝗮𝗶𝘀, the latest member of our NM community to be featured in our "Faces of NM" series.

Enilton is a Brazilian polyglot who speaks five languages and dreams of exploring the world. His diagnosis of Nemaline Myopathy (NM) hasn't stopped him from pursuing his passions and living life to the fullest.

Despite the challenges of NM, Enilton's positive spirit and determination shine through. He's an inspiration to us all, proving that a rare disease doesn't have to define your life.

𝗥𝗲𝗮𝗱 𝗘𝗻𝗶𝗹𝘁𝗼𝗻'𝘀 𝗳𝘂𝗹𝗹 𝘀𝘁𝗼𝗿𝘆 𝗼𝗻 𝗼𝘂𝗿 𝗯𝗹𝗼𝗴: https://buildingstrength.org/blog/faces-of-nm-enilton-neymakes-morais/

𝗧𝗼𝗱𝗮𝘆, 𝗹𝗲𝘁'𝘀 𝗰𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗲 𝗘𝗻𝗶𝗹𝘁𝗼𝗻 𝗮𝗻𝗱 𝗮𝗹𝗹 𝘁𝗵𝗼𝘀𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗡𝗠. Share his story and help us raise awareness about this rare neuromuscular disease.

𝗪𝗮𝗻𝘁 𝘁𝗼 𝗺𝗮𝗸𝗲 𝗲𝘃𝗲𝗻 𝗺𝗼𝗿𝗲 𝗼𝗳 𝗮 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝗰𝗲? Donate to our Nemaline Myopathy Awareness Day fundraiser to support research and help find a cure: https://www.classy.org/campaign/nemaline-myopathy-awareness-day/c570018

𝗙𝗮𝘀𝘁 𝗙𝗮𝗰𝘁𝘀 𝗔𝗯𝗼𝘂𝘁 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆: 𝗪𝗵𝗮𝘁 𝗔𝗿𝗲 𝘁𝗵𝗲 𝗦𝘆𝗺𝗽𝘁𝗼𝗺𝘀? 🤔

Did you know that Nemaline Myopathy (NM) is a rare condition that causes muscle weakness? It affects people in different ways, from mild to severe.

Here are some common symptoms of NM:

-𝗪𝗲𝗮𝗸 𝗯𝗼𝗱𝘆 𝗺𝘂𝘀𝗰𝗹𝗲𝘀: Some people with NM may need wheelchairs or other mobility aids.
-𝗪𝗲𝗮𝗸 𝗳𝗮𝗰𝗲 𝗮𝗻𝗱 𝘁𝗵𝗿𝗼𝗮𝘁 𝗺𝘂𝘀𝗰𝗹𝗲𝘀: This can make it difficult to speak clearly or swallow food and liquids.
-𝗪𝗲𝗮𝗸 𝗯𝗿𝗲𝗮𝘁𝗵𝗶𝗻𝗴 𝗺𝘂𝘀𝗰𝗹𝗲𝘀: In some cases, people with NM need support from breathing machines.

NM is complex, and every person's experience is unique!

𝗪𝗮𝗻𝘁 𝘁𝗼 𝗱𝗶𝘃𝗲 𝗱𝗲𝗲𝗽𝗲𝗿? 𝗛𝗲𝗮𝗱 𝘁𝗼 𝗼𝘂𝗿 𝘄𝗲𝗯𝘀𝗶𝘁𝗲 𝗳𝗼𝗿 𝗺𝗼𝗿𝗲 𝗶𝗻𝗳𝗼: https://buildingstrength.org/

𝗧𝗼𝗱𝗮𝘆 𝗶𝘀 𝗡𝗲𝗺𝗮𝗹𝗶𝗻𝗲 𝗠𝘆𝗼𝗽𝗮𝘁𝗵𝘆 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆! Let's shed light on this rare disease and support the NM community.

-𝗦𝗵𝗮𝗿𝗲 these facts with your friends and family.
-𝗗𝗼𝗻𝗮𝘁𝗲 to our fundraiser to support research and make a difference: https://www.classy.org/campaign/nemaline-myopathy-awareness-day/c570018
Together, we can raise awareness and build a stronger future for everyone affected by NM. 💪💜