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Welcome To The MHERF Newsletter Page!
Believe it or not…Two moms whose paths crossed while desperately seeking answers for their sons, Vincent & Robert, both suffering from MHE, was the beginning of something great!
Remember! - back in 2006, MHE was practically unheard of and we were in the dark as resources were very scarce. It was then, in 2006, that The MHE Research Foundation was founded by Susan & Craig Eaton and Sarah Ziegler.
But…MHE certainly was on unfamiliar ground when messing with these two moms!
After many hours of phone conversations comparing their stories about surgeries, pain & the struggles of their sons living with MHE there was no doubt that something had to be done!! Once they joined forces, The MHE Research Foundation moved forward rather quickly and has become the #1 resource for MHE Research, Education, Advocacy, and Clinical information in regards to MHE.
And most importantly, HOPE!
We are so pleased that through much dedication & hard work we are able to help so many people. Through our fundraising, we support the necessary research and medical conferences that have brought us to the first ever clinical trial for MHE! The O’Brien & Gilbert Families, whose sons also both suffer from MHE, have joined forces with us in our mission to raise funds for a cure.
Until MHE is no more, we will continue to fight the fight and we welcome anyone that
would like to join us in our mission!
Meet Our Inspiration!
Join Us In Our Fight!
Who are you fighting for?
Send us your pictures with names and we'll update our website with you and your loved ones. You'll also be featured in our next newsletter! We know we're not alone!
Rare Disease Day Symposium Recap - February 2019
The MHE Research Foundation represented Rare Disease Day at the Sanford Burnham Prebys Medical Discovery Institute in La Jolla, California. MHE families were present and Mauricio Pacifici and Yu Yamagucci; two of our researchers on our medical advisory board, were there to answer questions.
Because of your support from our many events, we were able to provide both Mauricio and Yu funding to continue their important research for MHE! We thank them for their years of progress and look forward to many more contributions from them in the future! They are true partners in our mission; to find a CURE!
3rd Annual "Wings of Hope" Golf Outing in Ambler, PA
Our golf outing hosted by the O'Brien's was a huge success this year! Our Platinum Sponsor Clementia Pharmaceuticals represented well at the outing and we thank them for our continued partnership.
Although it was a cold and windy day for mid April, we all had a lot of fun and a little over $28,000 was raised for The MHE Research Foundation. Thank you to all who participated, sponsored us, provided raffle items, or volunteered!
Get Ready For Funtasia 2019! El Caribe in Brooklyn, NY: Sept 8th 2019
The Eaton Family will once again host Funtasia Research Banquet, a bi-annual event celebrating The MHE Research Foundation's achievements and recognizing our researchers and doctors for their continued contributions.
Funtasia is the event that started it all, and we're pleased to say that this is our 8th banquet! Please mark your calendars!
Save The Date for the 3rd Annual Warrior Run!
Caleb is on a mission to eradicate MHE for good. He is a very compassionate boy and has a desire to help others with his condition. He came up with the idea of having a run to raise money for research with the hope of finding a cure, or at least, a better treatment option so others with this disease would never have to endure what he has had to.
This October will mark the 3rd annual Warrior Run! Come join Caleb on his mission!
“A MESSAGE FROM CLEMENTIA PHARMACEUTICALS”
The MHE Research Foundation would like to Thank and acknowledge Maurizio Pacifici, PhD, Yu Yamaguchi, MD, PhD, for their ground breaking research in MHE/MO that lead Clementia to its commitment to provide the first drug trials in MHE/MO and FOP with the goal of getting of Palovarotene approved by the FDA for clinical use in treating these conditions.
Acknowledgment to Sarah Ziegler through her efforts, Sarah located Maurizio Pacifici, PhD, Yu Yamaguchi, MD, PhD, and encouraged them to start researching MHE/MO as well as so many others. Susan and Craig Eaton for their drive and leadership to fundraising that provides research funding support. To all the MHE/MO families and others who have donated and will continue to the MHE Research Foundation THANK YOU as the progress to a better life for MHE/MO patients is because of your generosity!
“We began our collaboration with The MHE Research Foundation in 2017, and since then we have had the great pleasure to meet and interact with all of The MHE Research Foundation representatives on a variety of initiatives. Our close collaboration with The MHERF not only inspires us every day but it has also concretely helped us to integrate the perspective of MHE/MO families into the design of our recently initiated clinical trial with palovarotene.
Since its founding, The MHE Research Foundation has been relentlessly stimulating research, educating clinicians and advocating for MHE/MO. Its’ amazing work, and the contributions of the whole MHE/MO community, are a strong foundation for Clementia as we seek to develop a potential treatment for MHE/MO. We are committed to supporting The MHE Research Foundation so that it may continue its very important mission for years to come.”
THE MHE RESEARCH FOUNDATION HAS BEEN WORKING HARD TO CONTINUE TO RAISE THE MUCH-NEEDED FUNDS TO SUPPORT OUR RESEARCHERS, CONFERENCES, AND ALL OTHER EXPENSES INCURRED TO CONTINUE OUR WORK. WE ARE MOST GRATEFUL TO ALL OUR FAMILIES, FRIENDS, MHE COMMUNITIES LOCALLY & AROUND THE WORLD THAT CONTINUE TO BELIEVE IN OUR WORK AND SUPPORT US!