So when Elmore learned the director of the Pediatric Hydrocephalus Foundation's Indiana chapter had stepped down, she volunteered to fill the position.
"I didn't want any family to face hydrocephalus alone," said Elmore, who answers to a board of directors. "I wanted to make sure the state chapter would be there so they could get the same kind of help and support that I received."
Since assuming the directorship in November, Elmore has placed educational pamphlets about hydrocephalus in pediatricians' offices, made efforts to form family support groups, and put information about the state organization on Facebook.
"I also hope to have two local fundraisers within the next year that will include all the kids and their families," she said.
Elmore was recently delighted to learn that the national Pediatric Hydrocephalus Foundation has selected Aila and a young boy to be the 2013 faces of the organization. The two infants, along with their stories, will be printed in pamphlets that will be mailed to U.S. congressional representatives and used in other educational outreach efforts.
"The foundation is hoping their story will inspire families to realize that just because your child has hydrocephalus, it doesn't mean your child's life is over," she said.
The Pediatric Hydrocephalus Foundation raises awareness about the disorder and raises money for research on treatment options and, hopefully, a cure. The foundation also advocates on behalf of members by asking state and federal legislators to push for more research and support in the fight against hydrocephalus.
Since 2010, the foundation has awarded $125,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education.
Hydrocephalus Kids — http://www.hydrocephaluskids.org/wordpress/