Students Abigail Blevins and Chloe Kouns visit the U.S. Congress to advocate for the Tuberous Sclerosis Complex Alliance.
Precious Grundy | The Lima News
LIMA — A couple of sisters took a trip to Washington D.C. to advocate for a cause bigger than themselves. Shawnee students Abigail Blevins and Chloe Kouns marched on Capitol Hill to champion research for a disease that is close to home.
“Abigail has a neurological condition called tuberous sclerosis complex,” mother Tammy Thorne said. “She was diagnosed with it at seven months old. Since 2013, I have been involved with the national advocacy organization. Every year they do a march on Capitol Hill, where families who are affected by the disorder go and advocate.”
According to the Cleveland Clinic website, TSC is a rare disorder that can cause cells to produce too quickly. The disease also can create non-cancerous tumors throughout a person’s body.
Thorne also said there is one family from each state Washington D.C. The family previously advocated on behalf of the state of Kentucky. After moving to Ohio, they meet with representatives from Ohio asking for funding support.
“The meetings take a while, but right after you have another one,” Kouns said. “It is just one big day we have meetings nonstop.”
The program reportedly received $8 million for research in the year 2023. The money will go towards the Tuberous Sclerosis Research Program through the Congressionally Directed Medical Research Program. Thorne said the program is currently in the budget for $10 million.
“Abby has directly benefited from the research dollars,” Thorne said. “She has participated in the research through Cincinnati Children’s and we have had two medications FDA approved in the past 10 years through our research. Abby is on one of the drugs that was approved in the past 10 years. It has had a tremendous impact on her life.”
While in D.C., the sisters were able to meet with congressional delegates and share the importance of the funding.
“We got to share our story and other family’s stories and ask for help,” Blevins said. “We need this cure — it does mean a lot to us because we need their help.”
Reach Precious Grundy at 567-242-0351.
