Alyssa Asher of Princeton traveled to Washington, D.C., March 28-30, with her family to tell lawmakers about her experiences with epilepsy.
Asher, 10, was one of 44 youth from across the country who participated in Kids Speak Up!, a national program coordinated by the Epilepsy Foundation and funded by Abbott Laboratories.
The program rallies young ambassadors with epilepsy between the ages of 7 and 16 to personally petition congressional leaders for aid in assuring better access to care, improved public education and research towards a cure for epilepsy.
“Alyssa was selected to participate in Kids Speak Up! to represent the approximately 326,000 children under the age of 15 who are affected by the condition,” said Debbie McGrath, Executive Director of the Kentuckiana Epilepsy Foundation.
“She is an ideal candidate because of her eagerness to share her experiences with people in her community. She is an inspiration to us all,” McGrath said.
Accompanying Asher on the trip were her parents Steve and Cheyenne Asher and younger sisters Cailyn and Makenzie.
“Our trip to Washington was one of the greatest experiences in our life,” said Cheyenne Asher.
“I realized that I was sitting on Capitol Hill, telling the story of my daughter’s battle. These past years have all led to this moment in time that I could make a difference in Alyssa’s life,” she said.
The Asher family was able to meet with such people as Tony Coelo, who started the push for the Americans with Disabilities Act; Mike Simmell, a Harlem Wizards basketball player, and Chanda Gunn, the U.S. women’s Olympic hockey team goalie, who also suffers from seizures.
The Ashers also took time to speak one-on-one with Rep. Ed Whitfield and Sen. Jim Bunning and members of Sen. Mitch McConnell’s staff.
“Our day at the Capitol was amazing, and we left inspired and feeling like we had made a difference,” said Cheyenne Asher. “It was a trip that made me realize how proud I am of my daughters. Alyssa was not afraid to try to speak up, even when she could barely speak at all.
“In spite of having a seizure while we were visiting the Capitol, she endured to the end as she always does. I left DC with hope; hope for the funding for the programs we need, hope that our legislators were able to see the impact that epilepsy has on our life, and hope for my daughter’s future.”
Since returning home to Princeton, the Ashers have received letters from Senator Dorsey Ridley and from Gov. Ernie Fletcher.
“Representative Mike Cherry remains in contact and is always kind and understanding,” Cheyenne said.
“One of the speaker’s at the conference said, ‘If you want to change the world, allow parents of a disabled child to have a voice,’ and I hope and pray that our voice will be heard.”
