When our child was diagnosed with SCN2A, a rare and severe genetic disorder, our world changed in an instant. SCN2A disrupts the brain’s electrical signals, leading to profound neurological and motor delays, as well as severe and sometimes life-threatening epilepsy. The news was overwhelming and the fear was real. But amid this uncertainty, we learned an invaluable lesson: hope thrives in community.

Our journey with SCN2A has been filled with challenges, but it has also revealed the immense power of connection. We’ve found hope not only through the dedication of doctors and researchers but through the unwavering support of other families facing similar battles. The FamilieSCN2A Foundation – a global network of families, scientists, and advocates – has been a lifeline for us, offering resources, guidance and a sense of belonging in an often isolating world.

As the music director at First Parish Church in Yarmouth, I’ve long believed in the unifying power of music. It transcends boundaries, lifts spirits, and brings people together from all walks of life. So, a few years ago, I began organizing an annual benefit concert for the FamilieSCN2A Foundation. The concert provides our community with the opportunity to enjoy beautiful music in one of the most spectacular venues around, while also supporting a cause that is deeply personal to our family.

This year’s concert, Songs of Hope, will feature not only performances by gifted musicians but also community carols by candlelight. Among the featured performers are Molly Harmon (soprano), Joel Pierce (organ), Ellie Polenetsky (mezzo-soprano) and Matt and Erica Shipman from Darlin’ Corey. These talented artists have generously donated their time and skills to help raise funds and awareness for this important cause. Together, we’ll create a meaningful experience that reminds us of the incredible healing power of music and the strength that comes from unity.

I’m deeply grateful to my colleagues who come together each year, not for recognition but to help raise awareness and fund critical SCN2A research. These concerts are a testament to the power of collective action – showing that when a community unites around a common goal, we can make a tangible difference for families like mine. The support from our local community has been immeasurable, and it inspires me every year.

SCN2A is rare. Families facing it often feel isolated and unsure of where to turn. But through the FamilieSCN2A Foundation, families around the world can share their experiences, offer support and find comfort. The Foundation not only funds vital research but also offers patient assistance grants for expenses that medical insurance often does not cover. For our family, and for so many others, this organization has been essential.

As the new program manager for FamilieSCN2A, I am even more committed to our mission. I was so overwhelmed by the movement of this organization and the dedication of those involved that I felt compelled to do more. Now, in this role, I have the privilege of helping to drive forward research, provide resources for families, and continue to raise awareness for SCN2A-related disorders.

The funds raised through our annual concerts are vital to supporting these efforts – funding critical research, assisting affected families and advancing the search for better treatments. This is our way of giving back and ensuring that families in need have access to the resources and support they deserve.

As we prepare for this year’s concert, I want to express my heartfelt gratitude to the musicians, donors and community members who make this event possible. Your participation is more than just a donation; it’s a testament to the power of coming together for a meaningful cause. Whether you attend the concert, donate, or help spread the word, your support brings us one step closer to a brighter future for families facing rare disorders.

Please join us and give the gift of hope. This year’s concert, Songs of Hope, will be held on Sunday, Dec. 1, at 3 p.m. at First Parish Church, Yarmouth. Tickets will be available at the door with a suggested donation of $20 per person.