Spina Bifida Association of Greater New England

Learning to adapt has become a necessity since the beginning of the pandemic. Many organizations, like the Spina Bifida Association of Greater New England (SPAGNE), rose to the challenge by getting creative.

“Social isolation is already a problem for the disability community. With the onset of COVID restrictions, we scrambled to find ways to stay connected with our members and keep our members connected to each other,” says Jean Bertschmann, SPAGNE’s executive director. “All our programs were in person before the pandemic. We got our first Zoom account and started planning virtual options.”

Founded in 1971 by parents of children with spina bifida, SBAGNE serves more than 750 individuals and families in all six New England states. To help reimagine and fund the newly created virtual programs, Bertschmann applied for a Christopher & Dana Reeve Foundation Quality of Life grant.

“The Reeve Foundation is a very visible leader in the disability community, so the organization is always on our radar screen,” says Bertschmann. “Although spina bifida is different from a spinal cord injury, the physical impacts can be the same.”

The $19,500 grant SBAGNE received from the Reeve Foundation helped support the development of a variety of new virtual programs designed to improve physical and mental health, increase resilience and independence and expand social networks.

In 2021, more than 2,300 individuals with spina bifida participated in over 40 events created, thanks in part to the grant funding. The free programs ranged from biweekly support groups and interactive holiday parties to online classes and leadership training.

“We view virtual programs as an innovative new chapter in the continuum of support we offer to our members,” says Bertschmann. “Our collaboration with TransformU Leadership Academy has had one of the most profound impacts on our adult community. This leadership program empowered participants to expand their comfort zones, take leadership positions within our organization and move in new directions with their professional and personal lives.”

Supported in part by grant funding and created through a connection with the Arizona spina bifida chapter, the 12-week training program has engaged 15 individuals to date in identifying and building their strengths and a positive mindset. For many, the experience proved to be life-changing.

One participant said, “As a person with a disability, I was often the type of person to let others go first instead of being assertive. After this program, I can now take charge of my life and pursue greater things.”