Teen speak up up for epilepsy
By Kathy Fallert; photos courtesy of Candy Palazzo
Carly and her dad Ryan enjoyed their family trip to Washington, DC in March to attend the TSU conference near the Capitol building.
Carly (left) and her mom Candy (right) were Carly’s Crusaders at the National Walk for Epilepsy at the National Mall on March 25.
Thirteen-year-old Carly Palazzo, resident of Buffalo Ridge Estates, was diagnosed with epilepsy at the young age of 2 due to an unexplained gene mutation. Palazzo, along with 17-year-old Grace Garcia from Parker were chosen to represent Colorado at the annual Teens Speak Up! (TSU) conference in Washington, D.C. from March 26 through March 28.
The conference was held at the Ritz-Carlton, Pentagon City in Arlington, Virginia near the Capitol building. TSU had each of the kids tell their story and raise awareness with Congress and other local policymakers about what it is like to live with epilepsy. They learned about what is currently in Congress in terms of epilepsy, such as the CARERS (Compassionate Access, Research Expansion, and Respect States) Act of 2015 relating to the use of medical marijuana, which can help control seizures and the ACA (Affordable Care Act). They heard from speakers, including Rick Harrison of the television show “Pawn Stars” who also suffers from epilepsy, and they enjoyed some time with the other participants. Afterward, Palazzo went to Capitol Hill to discuss legislative items with Senator Gardner and Senator Bennett. Garcia met with four representatives from Colorado.
As a participant in TSU, the teens had to commit to a year of service to raise awareness about epilepsy. Palazzo intends to do fundraising through a neighborhood lemonade stand, fundraising at her school Mountain Ridge Middle School or at Valor Christian High School where her 16-year-old brother Lucas attends, and share posts from the national foundation on social media. The Palazzos also hope to schedule additional meetings locally with Colorado representatives to encourage their support for the National Institute of Health funding and Centers for Disease Control, both of which provide funds and research for epilepsy.
While they were in town, the Palazzos participated in the National Walk for Epilepsy as “Carly’s Crusaders” on Saturday, March 25 on the National Mall. Mom, Candy, attended the Public Policy Institute for Epilepsy to learn about the legislative items and to bond with other parents. Dad, Ryan, is on the board of directors here, and he attended the national meeting also representing Colorado.
Candy Palazzo said, “This program was so amazing for the girls to be able to learn about what is happening with epilepsy in regard to public policy. And being able to advocate for other people in Colorado that are living with epilepsy to their congressman was an honor.”
Grace Garcia (left) from Parker and Carly Palazzo (right) from Castle Pines met with representatives and senators from Colorado after the TSU conference to help raise awareness for epilepsy.
To find out more about TSU, visit their website at www.epilepsy.com/make-difference/advocacy/teens-speak-public-policy-institute.
