At A Foundation Building Strength (AFBS), our unwavering commitment to those affected by Nemaline Myopathy (NM) drives us to continually develop resources that empower individuals and families on their journey. We are excited to introduce two new resources that aim to provide valuable information, support, and awareness about NM: the Nemaline Myopathy Resource Kit and the Nemaline Myopathy Awareness Cards.

NM Resource Kit: Your Comprehensive Guide to Navigating Nemaline Myopathy

For those who have been diagnosed with Nemaline Myopathy, the journey can be both challenging and rewarding. To enhance this journey, AFBS has crafted the NM Resource Kit – a comprehensive guide designed to equip you and your loved ones with the knowledge and tools necessary to navigate the complexities of NM.

Understanding Nemaline Myopathy

The NM Resource Kit starts with an explanation of what NM is. NM is a genetic disorder resulting from mutations in one of 12+ genes that primarily affect skeletal muscles responsible for movement. The kit explains that NM often causes muscle weakness in the facial, neck, core, and proximal muscles (those close to the body’s center), such as those in the upper arms and legs. Additionally, NM can impact various organs and body systems. Learn more about Nemaline Myopathy by visiting our About Nemaline Myopathy page.

Empowering Your Health

We firmly believe that strength lies in unity. The NM Resource Kit encourages you to connect with others on a similar journey through various avenues, including following AFBS on social media platforms like Facebook and Instagram. Joining the Nemaline Myopathies page and participating in the Facebook discussion group, “Nemaline and Congenital Myopathy Community,” can provide you with a supportive network.

Learning and Growing Together

AFBS recognizes the importance of knowledge-sharing and community-building. The NM Resource Kit encourages participation in AFBS’s social gatherings, events, the SciFam Conference, and webinars. These avenues offer opportunities to learn more about NM and engage with a community that understands your experiences.

Tools for Advancing Nemaline Myopathy Research

AFBS is dedicated to driving NM research forward. The NM Resource Kit provides actionable steps for contributing to research efforts, such as joining the International Registry (CMDIR), undergoing genetic testing for diagnosis confirmation, and donating tissue samples. Ensuring clinicians use the correct medical code (G71.21) for NM is a small but impactful way to support research.

NM Awareness Cards: Spreading Awareness, One Card at a Time

Awareness is a powerful tool for change. AFBS has also developed the NM Awareness Cards – a free resource designed to bring attention to NM and foster understanding within communities. These cards serve as conversation starters and educational tools, helping you share information about NM with educators, friends, family, and even new acquaintances. For those interested in ordering NM Awareness Cards, simply visit this link and complete the order form.

Making a Difference Together

As part of AFBS, we invite you to make a difference in the lives of those affected by NM. By accessing the NM Resource Kit and utilizing the NM Awareness Cards, you play an active role in spreading awareness, advocating for research, and strengthening the NM community.

How to Access the Nemaline Myopathy Resources

The NM Resource Kit and NM Awareness Cards are readily available on the AFBS website. You can access the NM Resource Kit directly on the Resources & Support page or by visiting this link.

Together We Thrive

At A Foundation Building Strength, we are more than an organization – we are a family united by the goal of supporting and empowering those affected by NM. We invite you to explore these new resources, stand alongside us in raising awareness, and take steps towards advancing NM research. The journey may be challenging, but with unity and knowledge, we can overcome any obstacle that NM presents. Remember, together we thrive.

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