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A Reason to Fight

It is hard to imagine anything more devastating than a new mother being told that her baby has a brain disease and will die after battling prolonged respiratory illness, blindness, severe disabilities, and seizures.
Our son, Max Randell was only four months old when diagnosed with Canavan disease.

We wasted no time rallying together to fight for his life. Rather than accept the prognosis and put our beautiful baby boy in an institution as recommended by the doctors, we were determined to help our son live the happiest, longest and healthiest life he possibly could.

Our commitment to Max has taken us on a
life-altering journey through clinical trials for experimental medicine, fundraising, lobbying in Washington D.C., intense media relations, advocating for Max, and mentoring several other families along the way.

The fight to give Max and other children battling Canavan disease, access to the most ambitious research and treatments that can be found, has given way to breakthroughs in gene therapy, which can potentially help millions suffering from neurodegenerative diseases.
A happy boy worth fighting for; Max shares a laugh with Mom, CRI President, Ilyce Randell and "Gammie," Vice President, Peggy Shapiro-Nyeholt
Max with Dad, Secretary, Mike Randell

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