A few years ago, Dr. Thomas Weimbs, a researcher at the Weimbs Lab of UC Santa Barbara, performed a study on mice models of polycystic kidney disease (PKD). During…
My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…
Fields Taylor was 15 weeks old when she had her first seizure. They continued for months as doctors were unable to determine what was wrong. Then another seizure led to more tests…
On the day Remi Savioz was born, it seemed that the world had welcomed a perfectly normal healthy baby girl. On day three, that illusion was shattered when she began…
In 1924, a maverick young doctor at the Mayo Clinic named Russell Wilder came up with a diet that he thought would help people with epilepsy reduce the number of…
In theory, I know there are people who don’t like chocolate. I have been told they exist. And I respect that choice. But my chocolate-loving heart really aches for people…
Epilepsy. Doose Syndrome. Lennox-Gastaut. While no parent expects to hear those words, he or she is even less raedy to learn that those words are wrong. RareConnect.org describes when Macie was only…
This Michelle Tanner look-alike (she even knows the signature "you got it, dude!") is one of the brave faces of GLUT1 DS. RareConnect.org describes Gracie as a bubbly, strong willed three…
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