Shayanne Martin dreams of doing community health work in Zambia, but when her daughter is born with a host of medical challenges, she suddenly finds herself wondering whether the future she imagined is still within reach.
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"The Family Curse," by Allison Peck
Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.
Read More"Manageable," by Amy Wood
Amy Wood struggles to cope with her son's sudden brain tumor diagnosis, and managing the lifelong effects of his benign craniopharyngioma.
Read More"Not Strong At All," by Kim McClellan
Kim McClellan reflects on her lifelong battle with recurrent respiratory papillomatosis and learns how to use her voice to fight for change.
Read More"Maybe This Is Progress," by Mary Vyas
After Mary Vyas’s son is diagnosed with PSC,, she is determined to be a living liver donor.
Read More"For King Nazir," by Lakeia Nard
Lakeia Nard fights for answers to her son's rare disease.
Read More"A Picture Frame," by Axel Lankenau
When Axel Lankenau is told that both of his sons have an ultra-rare, life-limiting neurological disorder, he is forced to confront a future he never imagined.
Read More"Never Giving Up, One More Time ," by Nikki Stusick
Science evolving is a good thing, but it’s not always the answer you hope for.
Read More"That 'Spinning Room' Moment," by Jill Kiernan
This is a story about one family's rare disease journey and the birth of a community.
Read More"Wrestling with an Estranged Father's Legacy," by Jeff Levenson
In an unexpected twist of where he thought his life would take him, Jeff finds one of his greatest purposes in life raising awareness of and helping find therapies for rare diseases.
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