Project Alive

Partnership will provide the scientific community with patient reported data needed to advance treatment and cures

Grass-roots group raises $2.35 million through community events

Just second president for national non-profit formed in 2009

Giving Tuesday boosts efforts by more than $144,000, bringing non-profit closer to goal

Cyclists on a 1200-mile journey across four states enter Florida, their fourth state, this week to raise awareness of and funds for Hunter Syndrome and Project Alive.

Project Alive families from Nashville and South Florida will travel to San Diego, California, Aug. 2-4 to learn from and connect with other families from across the globe who are touched by forms of Mucopolysaccharidosis, one being Hunter Syndrome.

When her son Case was diagnosed with a rare disease called Hunter Syndrome, Melissa Hogan turned her grief and sadness into hope and, more importantly, action.

Donation in honor of Hunter Syndrome advocate Simon Ibell who passed away in 2017 at the age of 39 due to complications from Hunter Syndrome

Last month, nonprofit Project Alive began a campaign called #15byMay15 to raise the remaining $1.5 million needed to fund a clinical drug trial for the rare disease Hunter Syndrome / MPS II that could begin as early as this summer.

What if your child had a rare and fatal disease for which doctors thought they had developed a cure, but the cure sits in medical research limbo due to funding? This is the real scenario facing the parents who have formed the non-profit foundation...