Welcome to the Spina Bifida Association of Greater New England
We are a 501(c)3 organization working to support people with Spina Bifida as they reach for their goals and pursue a more fulfilling life. SBAGNE is a group of parents, adults with Spina Bifida, and dedicated professionals working together to support and encourage families and individuals throughout the Greater New England area. It is our goal to enrich the lives of those affected by Spina Bifida through education, parental support, social networking, advocacy and public awareness.
EVENT: 2019 Tour de South ShoreEVENT DATE: September 21, 2019THE STORY:On October 16, 2015, an 18 week ultrasound of our baby boy revealed he had a major birth defect called Spina Bifida. Spina Bifida is when there is an incomplete closure of the spine and membranes around the spine.We quickly learned ...
Jean BertschmannDear SBAGNE Community,It is with great pleasure that I introduce our new Executive Director, Jean Bertschmann. Jean enthusiastically accepted the reins of the position just a few weeks ago, and officially began working for SBAGNE on July 8. Some of you may have already met her at our annual ...
SBAGNE will be returning to the Boston Abilities Expo from September 13-15. This event helps you connect with organizations like ours, test cool, new assistive devices, and try out adaptive sports and recreation. We hope you’ll stop by our table to say hello! Or you could spend a few hours ...
Join our Adult Group! Adult Group dinners and events are geared towards adults living with Spina Bifida age 18 and up. Attendees are welcome to bring a friend or family member. This group was made to provide peer support for adults living with spina bifida and their loved ones. So ...
ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families. They are the result of the passage of the Stephen Beck Jr., Achieving a Better Life Experience Act of 2014, better known as the ABLE Act. The beneficiary of the account is the owner, and income earned ...
Have you ever stuck a phone or iPod into a empty toilet paper roll to amplify the sound? Or maybe you've used duct tape to open a jam jar? If you have done either of these things (or a slew of other tricks) then you've made use of a life ...
A DIY event is a fundraising event organized and hosted by you in your community.
Want to raise money for SBAGNE? Hold a DIY event. See the guidelines and ideas for your fundraiser.
REquipment is a great way to obtain free, gently-used, durable medical equipment (DME) for use by individuals and families in Greater Boston and Central Massachusetts.
You can search the inventory here.
The latest news can be read online.
We are honored to be selected as the recipient of funds raised from Alex’s Ride. The motorcycle ride will take place on Sunday, September 22nd at 9:30AM and the destination is The Red Barn, 455 Riverside Drive, Augusta, ME. If you are in the area, stop by and wish Alex a happy birthday!
On October 16, 2015, an 18 week ultrasound of our baby boy revealed he had a major birth defect called Spina Bifida. Spina Bifida is when there is an incomplete closure of the spine and membranes around the spine.
We quickly learned about the multitude of complications that can occur from mobility problems, bowel and bladder issues, to brain abnormalities.
The sadness in our hearts felt insurmountable as we journeyed through our pregnancy with so many uncertainties.
Then, on March 15, 2016, we met our beautiful son Liam! And he is perfect in every way despite the challenges he will face. He has had three surgeries so far. He is tough as nails. He kicks his legs and wiggles his toes. He has the sweetest smile, and we are so amazed by him.
Groups like Spina Bifida Association of Greater New England (SBAGNE) have been so important to us throughout our short journey so far, as we gather so much strength from other families living well with Spina Bifida. This is why we chose to donate to this cause this year.
The Hollerans
2019 TOUR de SOUTH SHORE Bike/Walk
From a 5K walk to a 50-mile bike ride, this fundraiser organized by the McCourt Foundation has it all! Participate on Sept 21st to enjoy autumn on the South Shore while supporting SBAGNE programs and help the team return to defend their title as fundraising champions! This year, the race will include a wheelchair start for the 5K race! Thank you to the Holleran family for getting us involved. Email Dan Holleran at dholleran@SBAGreaterNE.org to join the team. You can also donate to or join the team at https://give.mccourtfoundation.org/team/237725.
It is with great pleasure that I introduce our new Executive Director, Jean Bertschmann. Jean enthusiastically accepted the reins of the position just a few weeks ago, and officially began working for SBAGNE on July 8. Some of you may have already met her at our annual Walk ‘n Roll in June, since she spent the day working hard as a volunteer to help make this event the success it was.
What drew Jean to SBAGNE was the unique and critical resource it provides to families living with spina bifida, as well as the strength of its volunteer leadership and staff. Her commitment to our organization is evident, and I am confident as ever that she will serve our community well as our Executive Director.
Jean comes to us with over 20 years of leadership experience in nonprofits as well as in local and regional government. She has previously served as Executive Director of Live4Evan, a nonprofit organization providing temporary housing and other support to families whose children are receiving congenital cardiac treatments. She has also served on multiple boards of mission-driven, direct service nonprofits.
Jean lives in Hopkinton, MA with her husband and four daughters and is an avid quilter and community volunteer. She looks forward to connecting with the SBAGNE community and supporting the essential resources it provides to families.
The Board would like to thank Kirk Joslin for serving as our Interim Executive Director these last few months. He will be assisting Jean in the transition for the next two weeks. Please join me in thanking Kirk for his service and welcoming Jean to our SBAGNE office!
SBAGNE will be returning to the Boston Abilities Expo from September 13-15. This event helps you connect with organizations like ours, test cool, new assistive devices, and try out adaptive sports and recreation. We hope you’ll stop by our table to say hello! Or you could spend a few hours representing SBAGNE! Email llambert@sbagreaterne.org to volunteer to help cover our booth, meet prospective members, and talk about your favorite SBAGNE programs! Learn more about the Abilities Expo at https://www.abilities.com/boston/. This event is free and open to the public.
Join our Adult Group! Adult Group dinners and events are geared towards adults living with Spina Bifida age 18 and up. Attendees are welcome to bring a friend or family member. This group was made to provide peer support for adults living with spina bifida and their loved ones. So that we can give accurate head counts to restaurants, we ask attendees to RSVP with the number of their party to Laura Lambert at llambert@SBAGreaterNE.org by the RSVP date. SBAGNE makes reservation, and schedules, organizes, and promotes Adult Group events. At this time, we ask attendees to cover their own meal expenses. Watch Facebook for updates and become part of our Adult Group email list by contacting llambert@SBAGreaterNE.org.
Save the date of our next Adult Group dinners:
• Friday, September 27 at 6:30PM at Wahlburgers in Hingham, MA • Friday, October 25 at Double Chin HK Cafe in Boston, MA
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