The Spina Bifida Association of Greater New England (“SBAGNE”) is a nonprofit 501(c)3 corporation founded in 1971 by a group of concerned parents of children with Spina Bifida.
Mateo is our 2 year old, smart, sassy, happy boy. He was born with spina bifida, and had spinal surgery when he was one day old. He has defied expectations regarding mobility and continues to surprise his healthcare team with his gains. That is not to say we are out of the woods, we do expect at least one surgery to be necessary in childhood, with a lifetime of follow up with specialists. He has what many may consider to be an invisible disability, we will let him choose how he wants to share his story as he grows.
We are at the beginning of our journey and although we aren't sure what the future holds we know that SBAGNE will be there to support our family and other families like ours.
Every year since Mateo was born we have done a fundraiser for the Spina Bifida Association of Greater New England through participating on their charity team at the Falmouth Road Race. If you would like to donate we have included a link below.
Please note this fundraiser is for The Spina Bifida Association of Greater New England, and while we are members of the association we do not receive financial benefit and 100% of funds raised goes directly to SBAGNE to support their mission.
The Spina Bifida Association of Greater New England (SBAGNE) is a non profit organization that supports people with spina bifida and their families by offering:
critical programming • resources, information and referral • educational programs • teen transition programs • parent to parent program • financial assistance • spina bifida advocacy • social and community building events • monthly adult group meetings • youth and family programs
Partaking in the parent to parent chat has been an invaluable experience for us in terms of community support and shared knowledge. We know that as Mateo grows up he will benefit by making friends who share his unique challanges. We have also attended seminars hosted by SBAGNE and learned a lot about emerging research in the field.
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