Serving the Spina Bifida Community with the SBAGNE
I serve as the executive director of the SBAGNE. One of my primary roles is fundraising. I go out in the community and speak at different events and try to get the cash flow into the association to provide us the means to do our programming.
Focusing on Family, Self-Esteem, and a Healthy Lifestyle
We have several programs running throughout the year. Born to Be Amazing is one that caters to families who have a newborn with spina bifida. We provide an informational packet to let them know about the association, the various clinics and doctors in the area, and other medical information they would need to know as a new family coming into the spina bifida world.
Also, we promote the idea that your child is born to do special things and lead a special life, and the SBAGNE wants to celebrate that with you.
Another program we run is called BLING (Better Living N’ Girls). It’s a self-esteem and wellness retreat for tweens and teens living with spina bifida. The girls come with a parent, and throughout the weekend, we build relationships, self-esteem, and life skills. We have different medical professionals come in to talk. This past year, we had a nutritionist teach the girls how to build healthy snacks. We get a variety of professionals, such as mental health counselors and neurologists, to come talk about various issues that can arise when living with spina bifida and how to navigate them. We also have college counselors come in and point the girls in the right direction if they’re looking to further their studies and give them tips to succeed at that next level. One of the biggest things that these talks do is build relationships in the community. It lets the girls and parents know that they’re not alone and that they have somebody to call when they have a question related to spina bifida or to life in general. The retreat runs from Friday evening to Sunday afternoon, and it’s a really great time for the girls to get together, have fun, learn, and be empowered to live a better life.
We run a similar program for our tween and teen boys called BEST (Boys, Esteem, Success Training). It’s very similar to the BLING event only it’s geared toward boys. The boys and parents have a great time connecting, making relationships, and realizing that there are other kids their age living with spina bifida that they can talk to and relate to. What’s cool about both BLING and BEST is that past participants who have aged out of the program often come back as mentors for the weekend. By the third day this year, we had one young boy ask his mom if he could take his mentors home with him. They just create such a connection. Those are the types of relationships we’re looking for in these programs.
We want to foster that sense of not being alone and empowerment to succeed in life.
We don’t currently have anything for our adults, but we’re looking to launch a retreat similar to BLING and BEST at some point toward the end of 2018.
Raising Funds and Awareness
As a chapter of the Spina Bifida Association of America, we host an annual Walk-N-Roll to raise funds for our local chapter as well as the national chapter. It’s a fun family event where we meet at a local track and do a one-mile fun walk. People who use wheelchairs roll it and walkers walk it. We encourage our families to create a team and fundraise through a website we set up for them. There are two goals: raise funds for the association and raise awareness for spina bifida. The national chapter encourages us to do the event in a public place. Last year, we held it at a park, so we were able to explain what spina bifida is, who we are, and what we do to curious passersby. It’s a really great tool for us.
We also do the Falmouth Road Race on the Cape and the Tour de South Shore. These are events hosted by private foundations where they give us a certain number of bibs to participate. We ask everyone who wears one of our bibs to raise at least $1000 for the association, so we’ve been able to bring in a substantial amount through these races.
Other sources of funding include grants through different foundations and private donations.
Editor’s Note: Donations can be made at sbagreaterne.org/donate-now. Don’t forget to check with your employer to see if they offer a donation matching program!
Other Ways We Serve the Spina Bifida Community
We have an empowerment program where we offer a $1000 grant to one of our constituents who is seeking to better themselves or to create a program that would better the association. For example, the last person who received the empowerment program was a young lady who was looking to go to college. She needed help with tuition, and we were able to use the empowerment program to assist her.
We also have a small medical reimbursement program. With any sort of disability, you have medical supplies and needs that come up. We use it as an emergency program where we help reimburse medical supplies.
We recently partnered with an organization called REquipment. They receive medical supplies, wheelchairs, walkers, and other items as donations, and then they give them away free of charge to people in need.
Through the equipment program, we’ve had people receive things like power wheelchairs, walkers, and shower seats.
We could always use administrative help in the office and people to help with registration tables and crowd control at events. Another way to volunteer would be to join our board of directors. We also just need people out in the community to be our advocates and elevate our mission — to promote the prevention of spina bifida and enhance the lives of all affected.
Betsy Bailey has a diverse background including experience in marketing research at American Express, business operations and client relations with 601am, travel and culinary writing with VegDining, and playing volleyball professionally overseas.
Betsy is excited to get back into writing, something she’s adored since childhood, and thoroughly enjoys the process of getting to know her interviewees. On top of her work with Wheel:Life, she also teaches students learning English as a second language, speaks French fluently, and travels any chance she gets!