Volume 3 | November 2019
MHERF Newsletter - November 2019
The MHE Research Foundation thanks you for all of your support for Funtasia and The Warrior Run!
We raise money to support YOU! We help fund the research being conducted for MHE as well as help fund conferences where Orthopedic Surgeons can learn how best to care for YOU!

Please see our upcoming educational events and fundraising events below, including Dr. Feldman's webcast, conferences and more...
Funtasia Research Banquet Recap - September 8th, 2019
Funtasia, hosted by Susan Eaton & her family, was a great success, thanks to the continued support of amazing family & friends. Many families with MHE were brought together to share their stories at this event. It was a big step towards spreading awareness even further, as our drug trial continues to show promise for MHE patients.

With your help, we raised over $65,000! This money will help support our researchers to continue to pursue treatment options towards a cure for MHE. It also helps provide a voice for all people suffering from MHE at important conferences where researchers and orthopedic surgeons attend. The more they know about MHE, the better they can care for YOU!

Thank you to everyone for “Being Part of The Magic of Giving & Being Part of Finding a Cure!”

For a recap of Funtasia: CLICK HERE
American Society for Bone and Mineral Research (ASBMR) annual meeting-Sept 20-23, 2019
The Rare Bone Patient Alliance held a working group session for over 300 researchers and clinicians! Maurizio Pacifici, PhD (Scientific and Medical Advisory Board member for The MHE Reserach Foundation) gave a presentation on Palovarotene in MHE. Palovarotene is the drug being studied by Clementia for the treatment of MHE. Sarah Ziegler, representing The MHE Research Foundation, Co-Founder and Director of Research, was on hand to provide support and insight regarding the drug trial. Our hope is that our involvement with this conference can help improve research in MHE!
MHE Warriors Run in Lubbock, TX
Oct. 12, 2019

The Gilbert Family outdid themselves again this year by putting together another awesome MHE Run! They do a fundraiser every year in Lubbock, TX on behalf of their son Caleb who has MHE. Caleb completed the 1-mile fun run just 2 weeks out from surgery!!! He is a true warrior on a mission!

The walk / run helped raise over $30,000 for The MHE Research Foundation! Thanks again to Stacy, Lyndell, Caleb & all their volunteers & guests that made this possible!

For a Recap of the event: CLICK HERE
Upcoming Educational Meetings & Conferences 
Sponsored By The MHE Research Foundation 
Facebook Live Event for Patients
Happened Nov 22, 2019 at 4:30 pm EST
Dr. David Feldman of the Paley Orthopedic & Spine Institute, Co-Director of the MHE Center and member of the Medical Advisory Board for the MHE Research Foundation, did a Facebook Live event on the Paley Institute's Facebook page. 
Topic: Treatment of the Forearm in MHE . Watch the Facebook Live event and get useful information to help you talk with you orthopedist about MHE.

Other Up-Coming Events:

International Pediatric Orthopedic Symposium (IPOS)  
Dec 3-7, 2019: Orlando, FL. 

Presented by POSNA and AAOS, Orthopedic surgeons education. http://ipos.posna.org  Dr. Alex Arkader, Dr. Donald Bae, Dr. Matthew Oetgen, Dr. Dror Paley will be lecturing, Sarah Ziegler will have an educational display on MHE during this conference and provide support and insight to Orthopedic surgeons from around the world on the effects MHE has on patients and families. 

Rare Disease Day  
Feb 29, 2020

The MHE Research Foundation is currently working with the Rare Bone Disease Alliance on a Rare Disease Day. We will be providing more information shortly concerning this event (date & location). MHE patients/families are encouraged to participate. 

F or More Information On Our Upcoming Events: CLICK HERE
The Faces Of MHE
The Faces of MHE Campaign

Thank you for all of the new faces! Please keep them coming! We know we are not alone and we're always stronger when we come together. Enjoy your moment of fame!