2023 Annual Appeal

With your help, we continue to be able to serve thousands of individuals and families living with spina bifida across New England. Thus far, 2023 has been chock-full of amazing opportunities for our community to come together. Annual staples include our Teen Empowerment Weekend, Summer Family Picnics, Holiday Parties, and local Meet Your Neighbor outings. This year, we were able to pilot two brand new programs – a Family Camp Weekend, and a weekend conference for adults with spina bifida. We look forward to building on the success and expanding the impact of these new programs. Whether virtual or in-person, our goal is to support, connect, and empower the spina bifida community across New England.

In additional to social and educational programming, we are working hard to improve medical care for our community. We are updating our Diagnosis Day brochure to be shared with medical experts who are the first points of contacts for parents when they receive a diagnosis of spina bifida. We want to ensure that newly diagnosed parents have information and connection to other families to answer questions and share their experience as they contemplate their own journey. We are also committed to expanding access to medical care for the adults in our community. Pediatric care for children with spina bifida in New England is outstanding – likely the best in the country, if not the world. However, when individuals age out of pediatric clinics, it is virtually impossible for them to find informed and experienced adult medical care providers. This is unacceptable. With a lot of research, and a little bit of luck, we are developing a database of over 800 medical providers across New England who have treated adults with spina bifida. With your help, we can make our SB Adult Medical Provider Directory available not only to our community, but to the pediatric medical community as well.

In short, much has been accomplished, but much more remains to be done and we can’t do it without you!

Please consider making a generous donation to SBAGNE. All donations – large or small – are much needed, gratefully accepted, and responsibly allocated. They will help reach and serve more of the nearly 4,400 New Englanders with spina bifida and their families.

While we are counting on you, we are also here for you. If you are an individual or family living with spina bifida, we have resources, financial relief, catheter supplies, and programs to help. Don’t hesitate to call us at 1-800-479-1900. Our community is here to help.

With Gratitude,

Amie Richards

Board Chair, Spina Bifida Association

of Greater New England www.SBAGreaterNE.org

You can make a difference

for children and adults with spina bifida and their families!

Ways to give:

· Send a check in the enclosed envelope to SBAGNE, P.O. Box 681, Natick, MA 01760. · Donate online at www.SBAGreaterNE.org or via the donate button on our Facebook page.

· Schedule a regular monthly donation. · We even accept Crypto! https://thegivingblock.com/donate/spina-bifida-association-of-greater-new-england/

· Be sure to ask your employer if they offer a matching program, to double your donation!

Here’s what our participants are saying:

· “Please keep doing what you’re doing…these events are such a valuable way of helping folks feel connected in a time when connections are so hard to come by. The activity-based events are particularly fantastic because they combine fun and constructive activities with social bonding and community.”

· “The positive interactions of peers and mentors have continued to impact our daughter and her self-confidence. This far reaching experience supports her throughout the year – it is not just a weekend – it’s a lifelong journey with friends along the way.”

· “The SB Adult Weekend was wonderful! Everyone was friendly and helpful. The speakers were also wonderful. It was nice to be surrounded by people who understood my struggles. No one judged me or looked differently at me like others in my life. I learned a lot and it has motivated me to be part of this program. Thank you!”

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