Spina Bifida of Jacksonville – Support for Patients and Families
Spina Bifida Jacksonville is a 501(c)(3) non-profit organization founded in 1973 to provide support for families living with Spina Bifida. Spina Bifida is the most common permanently disabling birth defect in the United States. An average of 8 babies everyday are born with Spina Bifida or a similar birth defect of the brain and spine.
Our goal is to create a network of support for local families and their struggles. Spina Bifida Jacksonville strives to advocate for, educate and serve patients and families whose lives have been touched by Spina Bifida.
- Parent to Parent, Family to Family Support Groups
- Medical Reimbursement Program
- Social Events Held Every Other Month
- Volunteer Opportunities
- Dedicated Board and Staff
- Network of Shared Resources
More Than 166,000 Americans Are Living With Spina Bifida. If you have been impacted by someone with Spina Bifida and wish to help, you can make a donation to Spina Bifida of Jacksonville or learn more about how you can volunteer with Spina Bifida of Jacksonville.
New Executive Director Announced!
We are pleased to announce that Demery Webber, a Jacksonville native, is the new Executive Director of Spina Bifida of Jacksonville (SBJ). She is no stranger to SBJ, having served on the Board of Directors for 10+ years. As the mother of an 18-year- old with Spina Bifida, she understands the numerous complexities of, and the many challenges faced by those with Spina Bifida. Having a support network and resources in place has been vital in raising an SB child. With this in mind, she plans to further expand and develop SBJ’s programs and is excited and grateful to work a talented team of employees, volunteers and Board of Directors and serve those affected by Spina Bifida.
Demery earned a Bachelor’s degree in Business Administration with an emphasis on Advertising from the College of Charleston, S.C. Over the past 23 years, she held multiple positions in her family’s Industrial Filtration business from Customer Service to Inside Sales and Purchasing. She has also filled many volunteer positions over the last 22 years in her father’s nonprofit, the Amelia Island Concours d’Elegance. In the last 5 years, she and a small committee of 4 have raised over $200,000 developing and running The Amelia’s Silent Auction.
Not to worry if you think you’re seeing double at an SBJ event…she has an identical twin, Dana. While
spare time isn’t in abundance, her love of anything Disney, helping others and animals, particularly goats
and dogs, is.