Volume 1 | Nov. 2018
Welcome to the MHE Research Foundation Newsletter!
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!
THESE ARE A FEW OF THE MANY FACES OF MHE.
MEET VINNY, ROBERT, DAWSON AND CALEB... OUR INSPIRATION!
UPCOMING CONFERENCES SPONSORED BY THE MHE RESEARCH FOUNDATION.

      …WE ARE COMMITTED TO SUPPORTING COLLABORATION
  AMONGST THE MEDICAL COMMUNITY.
International Pediatric Orthopaedic Symposium (IPOS)
Orlando, Florida
Nov 27- Dec 1, 2018 
IPOS continuing education session Skeletal Deformity Correction in MHE/MO (program info located on page 23

Rare Disease Day Symposium
THIS CONFERENCE WILL BE OPEN TO FAMILIES WITH MHE.
Sanford Burnham Prebys Medical Discovery Institute La Jolla, California
Feb 28, 2019

Co-Organized: Yu Yamaguchi and The MHE Research Foundation 
Hank Kronenberg, MD, PhD,: Keynote Note Speaker, Bone Development
David Feldman, MD: Clinical Management of MHE/MO and An update on the MHE/MO Clinical Trial at the Paley Institute. 
Yu Yamaguchi, MD, PhD,: MHE/MO Research. 

Maurizio Pacifici, PhD,: MHE/MO Research. 

Judith Bovee, MD, PhD,: MHE/MO genetics/Chondrosarcoma.
Ellen Shore, PhD,: FOP (Fibrodysplasia ossificans progressiva).  
Fei Shih, MD, PhD,: Clementia Where the clinical trials stand in MHE/MO and FOP.
Benjman Alman, MD,: Olliers Disease.
John Graham, MD,: Larsen Syndrome.
Matt Warman, MD,: Osteogenesis Imperfecta, Albers-Schönberg disease.
David Ornitz, MD, PhD,: Achondroplasia: Development, pathogenesis, and therapy.

March 1, 2019: Meet and greet family gathering (Drs. Yamaguchi, Pacifci and Feldman are looking forward to spending time with you answering all of your questions and learning about your personal experiences)
Link with detailed information to follow shortly: Full program, hotel room block, child care during the Symposium etc. 

European Pediatric Orthopaedic Society Annual Meeting (EPOS)
Tel Aviv, Israel
April 3-6, 2019


Pediatric Orthopaedic Society Of North America Annual Meeting(POSNA)
Charlotte, North Carolina  
May 15 - May 18, 2019
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!
FUNDRAISING EVENTS
MHE WARRIOR RUN; LUBBOCK, TX

Thank you to the Gilbert family for a fantastic warrior run again this year raising money for the MHE Research Foundation! The Warrior Run raised over $32,000!!! Thank You for joining our mission to find a cure for MHE! Caleb is truly an inspiration to us all!

Click Here for a recap of the event


WINGS OF HOPE GOLF OUTING; AMBLER, PA
April 15th, 2019

Our next fundraising event will be hosted by the O'Brien's at Talamore Country Club in Ambler PA on April 15th, 2019. The O'Brien's host an annual golf outing on behalf of their son Dawson who was diagnosed with MHE in 2016.

Click Here for more information or email us at


FUNTASIA; BROOKLYN, NY

The Eaton's host a bi-annual event called Funtasia which is a research banquet in which we honor a doctor or researcher that is working diligently towards finding a cure. The date for our banquet in 2019 soon to be posted.

Click Here for more information or email us at





Interested in getting involved with fundraising? Contact Susan Eaton MHEFuntasia@gmail.com !
OUR PARTNERSHIP WITH 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. Maurizio and Yu are both on the MHE Research Foundation's Medical Advisory Board.

Acknowledgment to Sarah Ziegler for her efforts! Sarah located Maurizio Pacifici, PhD and Yu Yamaguchi, MD, PhD and encouraged them to start researching MHE/MO, as well as so many other researchers. Acknowledgment to Susan and Craig Eaton for their drive and leadership for 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 says THANK YOU! The progress towards a better life for people suffering with MHE/MO is because of your generosity!  

A Statement from Clementia Pharmaceuticals:

“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.”

Clementia has developed an informational page on the MOPed clinical trial for MHE!
Click Here to learn more!
Be Part Of "The Faces of MHE" Campaign!

Upload yours or your loved one's photo HERE and we'll update our website with your pictures. 
You'll also be featured in our next newsletter! 

We know we're not alone!   
Please follow us on Facebook and visit our website at www.mherf.org for frequent updates to all of our events, conferences, and updates on the clinical trial!
Thank you all for your continued support!