Save the Date for the "Wings of Hope" Golf Classic!
Monday August 30th, 2021
Talamore Country Club
723 Talamore Dr
Ambler, PA 19002
Mission and Purpose
Our son Dawson was diagnosed with MHE on his 3rd birthday. He will be turning 8 on January 5th, 2021. 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. Unfortunately the FDA put this promising treatment on hold for safety reasons and our foundation is working diligently to get this trial back on track. The entire community is hopeful with our progress, but we need your help to continue this fight.
That is why we will be continuing on in our pursuit to fundraise for Dawson's condition and will host our 5th 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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Tax ID# 42-1722962