Thank You All for making a cold windy day in April so memorable! We hope to see you again next year!
Mission and Purpose
Our son Dawson was diagnosed with MHE on his 3rd birthday. He will be turning 6 on January 5th, 2019 and by the grace of God, has not required any surgeries to date. Currently, the only treatment for his disease is orthopedic surgery to correct the bone growths that occur due to his condition. MHE affects only 1 in 50,000 people and due to the rarity of this disease, medical research and research funding is limited.
Last year you helped us raise close to $30,000 for MHE research and since then there have been a lot of developments, including the announcement of the first clinical trial by Clementia Pharmaceuticals exploring an oral medication for the treatment of MHE! The entire community is hopeful with this progress, but much more needs to be done to bring a treatment option other than surgery to the MHE community.
That is why we will be continuing on in our pursuit to fundraise for Dawson's condition and will host our 3rd annual Golf Outing at Talamore Country Club in Ambler, PA. All funds will go directly to the MHE Research Foundation which is organized by all volunteers and was established by a family whose son also has MHE.
Please consider one of our sponsorship opportunities and join us for another great day! Your help goes a long way towards supporting not only our family, but the MHE community at large.
Chris and Jackie O'Brien
MHE Research Foundation
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