Neurological diseases profoundly touch the lives of both the patients they affect and the people who love and support them. Find inspiration in the unique stories of these families, and learn how the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital is offering new hope.
In this section
The Wilsey Family
When Matt Wilsey daughter’s Grace was diagnosed with a very rare disease, NGLY1 deficiency, he travelled the world to get a diverse group of researchers to work on finding answers. He deployed his experience as a Silicon Valley entrepreneur and advisor to integrate patients, prominent researchers and clinicians to find a cure for this disease. In a recent interview to RARECast, a weekly podcast series hosted by Global GenesTM, a leading non-profit organization that advocates the needs of patients suffering from rare diseases, he describes his personal journey starting from the time his daughter received the diagnosis of a NGLY1 deficiency to how he has brought together a global community of NGLY1 researchers, advocates and patient families.
The Sanchez Family
When they saw how bravely their little son Alex dealt with his seizures, the Sanchez family gave him a nickname: "Little Warrior."
Jasmine began life as a normal baby – happy, active, and engaged. But by the time she reached toddlerhood, she'd retreated to a place her mother and father couldn't reach.
Nicholas' perpetually cheerful nature was, ironically, a sign that helped doctors unlock the mystery behind his severe seizures.