Oct. 16, 2017

Youth Advocates Shine at Evening of Hope Gala

On Wednesday, October 11, three youth advocates living with lupus with shared their experiences with the disease and hopes for the future during the Lupus Foundation of America’s Evening of Hope Gala. 

Emily Nguyen, 13; Alessandra Poso, 9; and Annelise Taylor Bedan, 12 told their stories of growing up with the debilitating disease, and underscored the urgent need for new treatments and cures for all those impacted by lupus.

Alessandra was diagnosed with lupus when she was 7 years old and has had to miss a significant amount of school due to doctor visits and chemotherapy treatments.
“Lupus makes me feel devastated, knowing that I have a disease with no cure,” said Alessandra Poso. “I hope that one day the cure for lupus will be found and help not just me, but the many others who suffer with lupus.”

Emily Nguyen was diagnosed when she was 8 years and has had already been through seven rounds of chemotherapy.
“I had to wear hats throughout third grade because I lost all of my hair,” said Emily Nguyen. “But that didn't stop me from doing what I love. I still played soccer, basketball and hung out with my friends and family. Even though I'm fine right now, I still have to worry about getting flares.”

Annelise Taylor Bedan was diagnosed when she was 6 years old and has become too familiar with hospitals, blood work, chemotherapy and infusions.
“Lupus constantly attacks my body,” said Annelise Taylor Bedan. “I had a stroke this summer. I’m feeling better now, but the toughest thing about living with lupus is waking up with pain.”

The Foundation is committed to improving treatment and care for children and their families, and in 2006 established the Michael Jon Barlin Pediatric Research Program, becoming the only lupus organization with a dedicated childhood lupus research agenda. As part of our commitment, we have also partnered with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to determine the key research needs in pediatric lupus. CARRA’s mission is to conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases and the partnership with the Foundation helps bring this mission to a reality. To learn more about the Foundation’s pediatric lupus research efforts visit, https://www.lupus.org/pages/pediatric-lupus-research-program.