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Clara Bragg enjoys a day at the Country Estates Recreation Association's pool with her family. On Friday and Saturday, June 29 and 30, there will be a Benefit Yard Sale for A Cure for Clara from 8 a.m. - 1 p.m. at 2706 James St. Photo courtesy of Melinda Habengreither

Yard sale benefits A Cure for Clara

You might not know it from looking at Clara Bragg – bright-eyed and all smiles in almost every photo – that she faces a rare and debilitating disease.

Clara Bragg is the daughter of Jenny Habingreither Bragg, from San Marcos, and Ryan Bragg, a Texas State graduate. At 1 year old, Clara Bragg began to plateau developmentally – struggling to walk independently and losing the few words she ever spoke. After chasing a diagnosis for an entire year, in August of 2016, she was diagnosed with GM1 Gangliosidosis, a rare terminal neurological disease that can lead to blindness, deafness, seizures, inability to move or self-feed, and is ultimately fatal.

GM1 gangliosidosis is an inherited lysosomal storage disorder that progressively destroys neurons in the brain and spinal cord. Infantile (type 1) GM1 gangliosidosis is the most severe type, with onset shortly after birth – usually by 6 months of age. Late Infantile and Juvenile (type 2)  – Clara Bragg’s condition – are considered intermediate forms of the condition and may begin between the ages of one and five. Features include ataxia, seizures, dementia and difficulties with speech. This type progresses more slowly than type 1, but still causes decreased life expectancy – around mid-childhood or early adulthood.

There is, however, hope for Clara Bragg and other children like her. There is currently no treatment or cure for GM1 Gangliosidosis, but there are several potential therapies being researched now that show positive signs in the lab and may be brought to a clinical trial in the future. 

According to the National Institute of Health, researchers at Auburn University and the University of Massachusetts have pioneered a gene therapy that has proven highly effective in animal models over the last five years, both extending lifespan dramatically as well as preserving function such as mobility and the ability to self feed. And the Cure GM1 Foundation was created for the sole purpose of funding this type of research and helping make a treatment and cure a reality one day.

According to her grandmother Melinda Habingreither, the hardest part of dealing with a  diagnosis like GM1 Gangliosidosis is not having a solution for it. Since Clara Bragg’s diagnosis, the family has launched a website, hosted dozens of fundraisers for the Cure GM1 Foundation and tried to create awareness around the disease.

“You can’t just sit by and watch a child fade away and die,” Melinda Habingreither said. “My family has dealt with this by trying to come up with a solution that would help her. We do fundraisers and we spread awareness.”

Melinda Habingreither will be holding another one of those fundraisers this weekend. On Friday and Saturday, June 29 and 30, she will be hosting a Benefit Yard Sale for A Cure for Clara from 8 a.m. to 1 p.m. at 2706 James St.

Eight families have donated items to be sold during the yard sale and all proceeds will go towards the Cure GM1 Foundation.

“I really hate it when people say ‘I wish I could do more,’ because people give what they can give and it isn’t just the money that we get from donations, it’s the sense that somebody cares enough to do something, to try to help,” Melinda Habingreither said. “The money is what’s needed to get the cure, but the sense that people care about what happens, that kind of gets us through the day.”

For more information or to donate to the Cure GM1 Foundation, go to the A Cure for Clara website.

San Marcos Record

(512) 392-2458
P.O. Box 1109, San Marcos, TX 78666