At A Foundation Building Strength, we are committed to making a positive impact in the lives of individuals and families affected by Nemaline Myopathy (NM), a rare muscle disorder causing muscle weakness. This summer, we’ve had the incredible opportunity to bring NM families together through a series of Regional Gatherings. These events not only provided a platform for sharing experiences and knowledge but also fostered a sense of community and hope. With the generous support of the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award #EACB-23111, we organized free gatherings across different locations, enabling families to connect, learn, and support one another.
Palo Alto, CA: Welcoming a New NM Family
In Palo Alto, CA, we had the privilege of meeting a family with a newly diagnosed baby affected by Nemaline Myopathy. Our founder, Marc Guillet, had the opportunity to provide support, guidance, and resources to this family during their challenging journey. It was a poignant reminder of the importance of our mission and the impact we can make in the lives of those affected by NM.
Virtual Gathering in Brazil
We hosted a virtual Regional Gathering in Brazil, led by our esteemed board member, Leticia Machado. This event brought together 69 participants via Zoom, including NMers, families, and specialists. The exchange of invaluable information and experiences allowed us to initiate a Brazilian database, connecting approximately 85 individuals associated with NM patients in Brazil. It was an incredible testament to the power of virtual connections and the global reach of our mission.
Asheville, North Carolina: Celebrating Togetherness
NM advocate Stacy Cossette hosted a heartwarming gathering in Asheville, North Carolina, which served as a social meet-up for families from Pennsylvania, Rhode Island, South Carolina, and North Carolina. Guests of all ages, spanning four generations, joined in the festivities, enjoying delicious food, live music, and engaging conversations. The event featured a captivating slideshow that chronicled the past decade of in-person gatherings organized by A Foundation Building Strength. Our founding family, the Guillets, also sent a personal greeting, reinforcing our dedication to NM families worldwide.
Dayton, Ohio: Building a Stronger Community
In Ohio, local NM mom Ali Boone spearheaded a gathering where families shared their stories, experiences, and the challenges they faced. An inspiring outcome of this event was the creation of a Facebook group specifically for NM families being seen at Cincinnati Children’s Hospital, where all the attendees’ children were receiving care. By fostering a sense of community and establishing regular get-togethers, these families aim to support one another and initiate philanthropic efforts in the coming years. A Foundation Building Strength stands beside them, offering resources and encouragement to ensure their goals are achieved.
Malmo, Sweden: A Special Time Together
Hosted by NM families Anna Hallgren and Johanna Dahl, this event provided a rare opportunity for families throughout Sweden and beyond to come together in person. Attendees had the chance to share their stories, resources, and experiences while celebrating connections and savoring Swedish delicacies. It was a truly special time that further strengthened the bonds within the NM community in Sweden.
“It was a very fun gathering in Sweden and we’re so grateful we were able to get together in person. We had a professor speaking that was great and both children and adults had a blast. Thank you very much to the AFBS team for making this possible in Sweden.”
-Anna Hallgren, NM Affected Individual and Parent to NM Affected Individual
New York City, New York: Families Unite
The New York City gathering welcomed 9 NM families from New York, New Jersey, Rhode Island, Pennsylvania and Canada. For two families, this was their first AFBS event and connection with other NM families. Dr. Eleanor Muise, pediatric pulmonologist at NYU Langone, gave a great presentation on pulmonary care and stayed until the end of the the event to interact with families. The kids were entertained by a magician and a henna artist joined, offering beautiful henna designs to both children and adults. It was a wonderful opportunity to connect, share and unite together.
Summary
The Regional Gatherings organized by A Foundation Building Strength this summer were truly transformative experiences for NM families. Through the generosity of the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award #EACB-23111, we were able to facilitate connections, exchange knowledge, and instill a sense of belonging among those affected by Nemaline Myopathy. We are immensely grateful for the support we received, and we remain steadfast in our mission to find treatments and improve the lives of individuals and families impacted by NM. Together, we can build a stronger community and create a brighter future for all.
Awesome stuff you guys! 🙂