Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds.
Read More"The Advocate I Never Planned to Become," by Necia Sabin
Necia shares her journey to finding her voice to help others.
Read More"The Simple, Powerful Act of Sharing Knowledge," by Ana Pataki
What began as her family’s journey through our younger son’s rare pediatric cancer diagnosis became Ana’s path into patient advocacy.
Read More"My Sister Callie," by Rocky Tucker
Rocky Tucker’s younger sister Callie is the 121st person to be diagnosed with Alstrom syndrome.
Read More"The Bridge That Built Me," by Ivana Badnjarevic
The Old Bridge in Heidelberg became the metaphoric turning point where a mother transformed from engineer to patient advocate, building a supportive network for families affected by rare neurotransmitter diseases.
Read More"She Is Nesba," by Scotty Sims
When Scotty Sims' daughter is born something seems off to her, but everyone around her dismisses her concerns.
Read More