Children’s disease leads to foundation

Ireland’s disease is so rare that it doesn’t have a name, treatment or cure — simply identified by the name of the gene it is on.

Earlier this year, her parents, Terry and Shanna Tolbert of Dunwoody, helped form the CACNA1A Foundation, a nonprofifit for their daughter and other children with this rare neurological disease to speed research options and establish clinical trials.

“CACNA1A is a gene that plays a vital role in the communicationbetweenneurons in the brain,” according to www.cacna1a. org.

Ireland’s CACNA1Amutation is neurodegenerative, “meaning things do not get better from here,” Shanna said.

The foundation’s treasurer said, “For about a year, I felt called to share Ireland’s story on the internet. When I fifinally put her story out there, I connected withanotherCACNA1Amom, Lisa Manaster,” who is the foundation’s president.

“Sincemeeting Lisa virtually and a fewothermothers withaffffffffffffectedchildren, every door has opened along the

way. I believe God brought us together for a purpose,” Shanna said.

Incorporating in March and launching its website in July, the foundation has raisedmorethan$100,000in threemonths as a parent-led volunteer organization, with allmoney going toCACNA1A research through the foundation’s grant program.

“Ireland has opened our heartswider and grown our faith deeper than we could have ever imagined,” her

mom said.

Whilemost ofher days are fifilledwith normal activities, the severe epileptic seizures the 5-year-old has are medical emergencies.

Events next year will include the foundation’s first annual Scientific and Family Conference — to be online with the date to be determined — and RunWalk Roll on June 12.

Information: cacna1a. org/ events, facebook.com/ cacna1a

CONTRIBUTED The Tolbert family includes Brooke (fromleft), Shanna, Ireland and Terry. The Tolberts areamong the founders of the CACNA1A Foundation to fifind a cure for children, like their Ireland, who have a rare diseasewith no treatment and no cure— yet.