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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.



Latest News

Thanks to the Dunkin Donuts/Baskin Robbins Community Foundation for their support of the Annual Empowerment Program!

SBAGNE has received a generous grant from Dunkin Donuts/Baskin Robbins in support of the Empowerment Program and has made some changes to the program as required by DD/BR.

$200 per year maximum
SBAGNE can only make payments to providers. Disbursements will not be made to famil

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2016 Falmouth Road Race - Get Ready! August 21st



Sunday - August 21, 2016

SBAGNE is once again fortunate to receive 11 entries for the Numbers for Non-Profits Program through the Falmouth Road Race. Team SBAGNE participants raise funds an

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REquipment - Durable Medical Equipment

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.

T

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Transitioning from pediatric to adult care: Insights and more

Meet some caregivers of the future: an aspiring nurse, a hopeful child life specialist and an ambitious doctor-to-be. They are all long-term patients of Boston Children’s Hospital, members of the Boston Children’s Read More

UVM Spina Bifida Collaborative Care Program (SBCCP)

UVM Medical Center in Burlington, Vermont is excited to announce their Family Centered, Multidisciplinary Spina Bifida Collaborative Care Program (SBCCP) is up and running. Starting in September 2015, this monthly clinic offers pediatric services in Nephrology, Urology, Neurosurgery, Psychiatry, Ort

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Volunteer Opportunities at SBAGNE

SBAGNE is always looking for volunteers! Please check out the opportunities that we have available! Visit the Volunteer Opportunity page for more information and volunteer today!

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Making My Way Through College

Making My Way through College is a guide for any student pursuing a degree or other type of credential (e.g., certification, license) at a two-year or four-year community college, college, or university. You will find information on a variety of topics relevant to preparing for and succeeding in col

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4th Annual BEST Weekend - Oct 14-16, 2016



Boston-Children’s Hospital, Myelo Clinic and SBAGreaterNE
For the 4th Annual BEST Weekend

BEST (Boys, Success, Esteem, and Training) Wee

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Spina Bifida Health Care Program

The Department of Veterans Affairs (VA) Spina Bifida Health Care Benefits Program covers most health care services and supplies that are medically or psychologically necessary. The VA can also reimburse expenses for travel to and from your doctor or health care facility. Some services require specif

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The 10 Best Social Sites for Friends with Spina Bifida

If you have Spina Bifida, or love someone who does, we hope you’ll enjoy this list of the 10 Best Social Sites for Friends With Spina Bifida, courtesy of SaveMyMedicalSupplies.org.

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2016 Tour de South Shore Bike/Walk

 

Mary's Photo

EVENT: 2016 Tour de South Shore

EVENT DATE: Oct 01, 2016

THE 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 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.

2016 TOUR de SOUTH SHORE Bike/Walk

Wompatuck State Park, Hingham, MA

The McCourt Foundation’s annual 25/50 Bike event is going to be even bigger this year as we introduce a 5K Walk! Now everyday athletes as well as avid cyclists can get involved to support and honor loved ones with these diseases in a fun, healthy, community event. Participants can join an established team, start a new team or go solo. Each participant is challenged with the goal to raise $200.

BIKE

The bike will travel through the towns of Hingham, Cohasset, Scituate, and Norwell with Police details throughout the course.

Start Location: Wompatuck State Park, Hingham, MA

  • 6:30 am Registration
  • 7:30 am 50 Mile Bike
  • 8:30 am 25 Mile Bike

WALK

Start Location: Wompatuck State Park, Hingham, MA

The walk will take place within in the park on the walking trails and will be well marked.

  • 9:00 am 5K Walk

CELEBRATE!

At the end of the event, enjoy a real fun Tailgate with Lunch, Cold Beverages and entertainment at our Athletes Village.

The event will occur, Rain or Shine!

2016 Falmouth Road Race – Get Ready! August 21st

frrlogo

Sunday – August 21, 2016

SBAGNE is once again fortunate to receive 11 entries for the Numbers for Non-Profits Program through the Falmouth Road Race. Team SBAGNE participants raise funds and awareness for SBA of Greater New England. In 2015 Team SBAGNE raised over $40,000 to support programs and services. In 2016 we hope to raise $45,000 more. Minimum fundraising amount is $750. Are you a runner or do you know someone who would like to participate in the Falmouth Road Race and support SBAGNE? Interested Jeff at jvendetti@SBAGreaterNE.org or Falmouth Road Race – Register today online.

Put your running shoes on, start training now!

4th Annual BEST Weekend – Oct 14-16, 2016

BEST Logo

Boston-Children’s Hospital, Myelo Clinic and SBAGreaterNE

For the 4th Annual BEST Weekend

BEST (Boys, Success, Esteem, and Training) Weekend will include two night stay at the hotel, educational seminars about healthy living, nutrition and athletics.

When: Friday, October 14th – Sunday, October 16th

Where: Homewood Suites, Canton, MA; All Activities will be held at Pappas Rehabilitation

Who: 10 Boys (ages 12-17) living with Spina Bifida and one parent

(Space is limited to 15 boys and a parent. A waiting list will be available)

Cost: $25.00 per parent/son

Register and pay below or if you intend to register on-site

RSVP: By October 10, 2016 to Ellen at edugan@SBAGreaterNE.org or 888-479-1900

Supported by a Grant from the

Putnam Foundation

Click here to register

 


Research Studies

MedStar National Rehabilitation Hospital has developed a questionnaire that will help you track your urinary symptoms and assist you with deciding when you need to start treatment. You are invited to participate in testing the questionnaire if the following apply to you:

1. You have a neurogenic/neuropathic bladder and use intermittent catheterization for bladder management.

2. You have a spinal cord injury or spina bifida and are over 18 years of age OR you are the parent or caregiver of a person with spina bifida.

If you meet these criteria and are interested in participating in our survey, please follow this link: http://www.iwellnessforlife.org/survey/.

For questions, please contact:

Inger Ljungberg, MPH
E-mail: inger.h.ljungberg@medstar.net
Phone: (202) 877-1694

Additional Opportunities Here

Get Active Now!

SBAGNE and Waypoint Adventure are partnering for our new GET ACTIVE! program

Watch for new opportunities in 2016!
Donate Today!
Join Now

SBAGNE
219 East Main St.
Ste 100B
Milford, MA 01757
888-479-1900