Science evolving is a good thing, but it’s not always the answer you hope for.
Read More"Thankful," by Riley Blevins
Riley Blevins went to work for Cure HHT in hopes of helping his son. But turns out, he wouldn't be the one doing the saving.
Read More"Giving Up," by Heidi Wallis
This is the story of a type-A rare disease mom who tries for years, but can't undo her daughter's brain damage, so she sets out to stop other children from facing the same fate, and learns in the interim that "giving up" is just what you need to do sometimes.
Read More"Searching for Answers," by Zoe Wisnoski
Zoe Wisnoski's son has a high fever so she searches for answers that are not always so easily given.
Read More"Answering the Shrug," by Yssa DeWoody
When a doctor offers only a shrug in response to her daughter’s exam, Yssa DeWoody sets off on her path to becoming an advocate.
Read More"Reason to Hope," by Melissa Chaikof
When Melissa Chaikof receives first learns that her daughters are profoundly deaf and then, when they are older, that they are also going blind, she cannot sit back and wait for others to find a cure.
Read More"The Day My World Changed," by Maddison Hall
After dreams of a perfect parenthood, Maddison was thrown into the rare disease world and became an unexpected advocate for her daughter and others in the Glut1 Deficiency Community.
Read More"What's Wrong With My Baby?" by Julie Raskin
Julie Raskin recalls her son's birth and strange variation of nursing and sleep of the first two days of his life.
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"Super Bowl Sunday: Diagnosis Day," by Erin Coller
After a year of seeking answers and a diagnosis for her toddler son’s delays and seizure, Erin Coller shares how, one Super Bowl Sunday, a phone call from the neurologist changed their lives forever.
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.
Read More"Heart vs. Brain," by Cassi Friday
A scientist used to compartmentalize as a way of emotional preservation but learned to harness the anxiety that comes with being a rare disease caregiver to help patients with her children's rare disease.
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