Always for the Children

JFF Blog

Tue, Sep 19, 2017

Community News


Category: General 

MILES 4 The Kashman! 

Please consider supporting one of our moms, Debbie Maughan as she runs her last two marathons, #33 and #34, Chicago and NYC marathons back-to- back! Here is the reason behind her drive! 

"There are times when I look at Kash and I feel sad. Sad that he has this little body that cannot walk, jump, run, and do all those things that a 10 year old can and should do. He knows he can’t do those things, yet he continues to dream. He’s told me that, and it makes my heart ache for him. However, Kash knows his limitations, accepts them, and has found peace with them. And to me, that is why he is so amazing! I want him to know without a doubt, how special he is. I want him to know and feel how loved and how admired he is. I want him to know that I am so grateful and blessed that I was chosen to be his Mommy. It’s an honor and a privilege that God gave me the chance to better myself through Kash. I needed him as my son, probably more than he needed me as a mom! I want Kash to experience and feel as much as he can while he is with us. I want him to learn and grow, continue to fight this disorder, and continue to bless our lives with his sweet, innocent, yet wise spirit. Our dream someday, is that he will talk, walk, run and be funny just like a “normal” boy. But for now, I will take this special little boy, with all his limitations, and cherish his talents, his personality, and his unconditional love. I am running for the Kash's of the world!" #Miles4TheKashMan #Miles4ACure #chicagomarathon #nycmarathon

"Gene Replacement Therapy that works in dogs to be tested in children" 

National Network Coverage on MTM back in May of 2017 

A Montage of pictures from this years gathering of families and dear friends 

Our hearts are full after spending a few days in July at the 2017 MTM-CNM Family Conference. The Family Conference Committee has put together an incredible gathering of over 48 families, three biotech companies and professionals from several countries. If you click on the link above, you can see a montage of pictures gathered from families that willingly shared with us for you to enjoy. These families walk a difficult road and until you have walked in their shoes it's hard to comprehend. Next time you see a family with a special child take a moment to extend grace. A simple smile or a sincere hug can brighten a dark and lonely world. #Nashville #Family#RareDisease #Music #NovemberRain      
 to learn more about the conference and their efforts click here


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WFIRM's 2017 Joshua Frase Summer Scholar

Hayley Premo
Christopher Newport University, Neuroscience
Faculty Advisor: Dr. Tracy Criswell, PhD, Assistant Professor
I recently graduated from Christopher Newport University with a Bachelor’s of Science in Neuroscience and a minor in Leadership Studies. I’m a pre-med student and have just finished applying to medical schools.  However, research has always been a significant part of my undergraduate career.  At Christopher Newport, I participated in two different labs, leading projects in both. I’m originally from Winston-Salem so one of the reasons (among many others) that I applied to the WFIRM Summer Scholar program was to be able to come back home for a summer while being able to continue carrying out scientific research. I first became interested in regenerative medicine during one of my neurobiology classes when we began learning about neurodegenerative disorders. I developed an interest in Alzheimer’s Disease in particular and began looking at regenerative medicine as being utilized as a potential treatment. I wanted to learn more about this type of medicine and how it’s evolving when I discovered the WFIRM program. The interdisciplinary and immersive nature of the program seemed like an ideal environment to be introduced to the field of regenerative medicine.   
 Read more... 

Our commitment to our community remains strong.

The Joshua Frase Foundation