WE NEED YOUR HELP
KIDS, PARENTS AND DOCTORS CAN JOIN THE MISSION.
KIDS AND PARENTS CAN HELP
Join the mission and hide your ultra-rare card the next time you visit to the doctor. Download the card sleeves. Help spread the word.
A MESSAGE FOR DOCTORS
We need your help looking for kids with ultra-rare diseases. An early diagnosis saves children with diseases that have treatments and gives those that don’t a chance to fight their fate.
Who's behind this PROJECT
A mother. A father. And a boy named Jonah.
Our inspiration is the Pokemon-loving, 8 year old Jonah. In 2011, he was diagnosed with Sanfilippo Type C, an ultra-rare diseases for which there is still no cure. That same year Jonah’s mom and dad formed Jonah’s Just Begun, a foundation that raises funds and then distributes them to academic researchers focused on Sanfilippo TypeC.
Jill, Jonah, and the astute pediatrician, Dr. Hai Cao, who diagnosed Jonah at 22 months old.
WE HAVE JUST BEGUN
Jonah’s Just Begun as two goals: first, to drive the science that will ultimately lead to a cure for Sanfilippo Type C; and second, to raise awareness for all rare diseases. We also empower and encourage others affected by rare diseases to advocate for cures.
“Jonah was lucky because he had a doctor that did not ignore the little symptoms that he saw. I like to say, Dr. Cao heard the hoofbeats, he didn’t think Horse he thought Zebra.”
