The Spina Bifida Association (SBA) is holding their annual Teal on the Hill event. Members from across the nation will come together virtually March 1 to advocate for a variety of disability rights issues.
The SBA is a voluntary health agency that works in research, advocacy, clinical care and education for those impacted by the birth defect, for which there is no cure and results in a spinal cord injury before a baby is born. In the United States, there are an estimated 166,000 individuals impacted by spina bifida. More than half are adults living with the condition.
This is the fifth year of the event, and the group will champion for increased funding for the National Spina Bifida program at the Centers for Disease Control & Prevention (CDC) – the only place in the federal government where there are studies and research about the complex condition for children and adults.
The President and CEO, Sara Struwe, said that the event gives those impacted by spina bifida a chance to voice their concerns and needs to congress.
“There are approximately 11,000 people in that registry in a longitudinal study to look at outcomes of people over time and for topical areas based on different interventions and treatments that are deployed to see how we can better improve the outcomes for people with spina bifida,” Struwe said.
They’re asking for an $11 million budget for the program — currently funded at $7 million — to continue research.
SBA says increased funding would help to ensure appropriate, accessible care for adults with spina bifida, as well as help minimize barriers to the completion of the transition process when leaving pediatric care and entering the adult care system, mental health issues and more.
Members of the SBA, their families and others in the community can visit SBA’sevents page to help advocate to members of Congress on behalf of those who experience life with spina bifida.
To get involved with other issues concerning the Spina Bifida Association, please visit their website, click on “Get Involved” then click on “Advocacy.”
