Quality of Life Spotlight: Spina Bifida Association of Greater New England

Posted by Reeve Staff in Daily Dose on March 22, 2022 # Quality of Life

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.”

Many of the academy participants have since pursued opportunities as mentors and volunteers. Advocacy efforts from academy participants also led to a proclamation from the governors in all six New England states declaring October as Spina Bifida Awareness Month.

As part of SPAGNE’s focus on promoting better health, the grant helped support a month-long wellness challenge that featured online programming to underscore the importance of hydration, nutrition, movement, sleep and overall self-care. Grant funding also provided two scholarships for SPAGNE teenage members to participate in You're With Us!, a Massachusetts-based program that creates inclusion opportunities for young adults with disabilities with college sports teams.

“One of our most popular events was the Strut and Stroll: Fashion for All virtual fashion show done in collaboration with the sister chapter in New York,” says Bertschmann. “More than 1,200 people watched the event live on Facebook, which included an adaptive clothing fashion show and a roundtable discussion with the models and designers about the adaptive fashion industry and its future. It was a lot of fun, and it also helped raise awareness about the need for adaptive clothing for people with disabilities.”

Other grant-funded events include virtual support groups for adults, teens and parents, an Intro to Acting class for teens and numerous roundtable conversations on topics ranging from adaptive fitness and independent living to sexual and reproductive health and parenting. Members also had the opportunity to participate in virtual interactions with renowned para-athletes, including Jean Driscoll, Daniel Romanchuk and Enock Glidden.

“Of course, one of our favorite ways to build community connections is through our parties,” says Bertschmann. “We hosted separate virtual Valentine’s events for four age groups, including a toddler music and movement class, a pre-teen craft class, a teen cooking class and an adult self-care class. Thanks to the grant support, we were able to send kits with all the needed supplies to participate to each pre-registered family.”

In December, SPAGNE hosted both in-person and virtual holiday parties. The online party included a cookie decorating class (with dough and decorations pre-sent to all participants) and Santa reading The Polar Express. Follow-up gifts with personalized messages were also mailed to all the children.

“My daughter felt like she was on the kids champion baking show,” said one mom whose daughter participated in the cooking class. “It was a perfect pace. [The pre-sent kits] allowed us to prep beforehand. That made a huge difference as the other teens didn’t see how much or how little she could do. It’s important that she sees all the differently abled teens. ‘Diversity is being invited to the party. Inclusion is being asked to dance.’ – Verna Myers.”

Although it is an affiliated chapter of the National Spina Bifida Association, SBAGNE has no financial relationship with the national organization. Last year through these new virtual programs, the organization added 61 new families to their membership, formed 20 new partnerships with peer organizations and added more than 1,000 new social media followers.

“The Reeve Foundation made all of this possible,” says Bertschmann. “It was truly a game-changer for us this year. The Reeve Foundation’s tremendous support helped get so many programs off the ground, and we have many more ideas in mind for future opportunities.”

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.