Always for the Children

JFF Blog

Tue, May 02, 2017

2016 Year In Review

Category: General 

 

The Woodard Family, Susan, Zachary, Brent and Gracie.

 Doing something always requires faith. Accomplishing something often requires miracles. Bridging the two is what leads to transformation. 

When I look back on Joshua’s life and legacy, I am left astounded by how great his impact has been and will continue to be. When looking back on 2016, I am struck by what we as a foundation, and a community have been able to accomplish. 

As many of you may remember, I was able to embark on a Tour for a Cure in May 2016 by visiting with some of JFF’s European families and research partners. I visited three CNM/MTM families in Rome, participated in a workshop in Amsterdam hosted by the European Neuromuscular Center, spent a day at Genethon with Anna Buj Bello in France, and ended the tour in Frankfurt at the 2016 ZNM -Zusammen Stark! and the Myotubular Trust European Family Conference. I was blessed to share with other parents our dreams, our hopes, and our fears and a promise of a bright future. Meeting these families face to face for the first time, shared a common compassion that this disorder knows no bounds, it is not a respecter of persons and it touches every continent from every walk of life.
 
 
In November, Paul participated in the 2016 Seattle Marathon, running alongside Dr. Casey Childers. We will not mention who beat who, but when I was asked my response was “Let’s just say that the brain beat the muscle.” The support and encouragement we received from this campaign fueled our torch! Combined with a fundraiser hosted by Dr. and Mrs. Robert Garcia at Contoura Facial Plastic Surgery in Ponte Vedra, FL your generous support helped us raise close to $25,000, all donated towards Dr. Childers work .

Additionally, The Scoggin family's capital campaign that spanned 2015 and ended in early 2016 with Hope Happens raised $10,000 supporting Dr. Childers on behalf of their son, John. John’s story is one of incredible perseverance, resilience, and, of course, hope. To read his story in full, please click here.
 
 
The Joshua Frase Foundation would also like to take a moment and recognize the immense generosity of Brent and Susan Woodard, one of our MTM families. As one of our largest 2016 contributors, JFF asked the Woodard’s to share their thoughts:

 "My family donates to the Joshua Frase Foundation because we feel strongly about making a difference in the lives of families impacted by MTM.  We also donate because of our immense love for our son Zachary who has MTM.  Zachary is now 13 and has overcome numerous obstacles in his life.  He is an inspiration to many people and his impact on the world far exceeds the challenges he faces.  Paul and Alison’s steadfast dedication to finding a cure provides us with hope that we can beat this disease together. We share a special bond with Paul and Alison because they truly understand the daily reality of having a child with MTM and the constant struggle for life.  I am personally encouraged by their strength, faith and commitment to a cure. We are delighted to know that our donations to JFF have been used to advance Gene Therapy in pre-clinical trials that will hopefully lead to a cure. We believe that one day our precious son will get stronger through the medical research pioneer by JFF. My family is committed to a long-term relationship with the Joshua Frase Foundation". 

The foundation was also able to give two $500 scholarships to scientists traveling to Europe for research with the European Neuromuscular Center (ENMC).  JFF then gave another $1000 directly to ENMC's titanopothies workshop.  It was wonderful to support Sarah Foye as she continues to be the momentum behind these research initiatives.

Ryan and Lindsay Jones, along with Monahans High School in Texas had a fund raiser for Raxton Jones selling the Raxton Strong tee shirts and raised 1200.00 to support the foundation’s efforts.  The Jones’ family has been an integral part of not only raising funds but increasing awareness for our community. 

The 2016 Year End Letter was the Joshua Frase Foundation's most successful yet, bringing in $90,400.  This made up the majority of the estimated $111,000 that the Foundation was able to raise in 2016 alone.  Our largest year-end gift was a $50,000 contribution from Wayne and Delores Barr Weaver.  This gift directly financed Dr. Jim Dowlings's small drug clinical trial soon to commence.  In partnership with  a number of other organizations, these funds are supporting a clinical trial for myotubular myopathy as well as new research to identify and validate new drug targets and test the concept of combinatorial therapy (where multiple drugs may be used to treat MTM). 

Another $25,000 of this budget was donated to the Powell Gene Therapy Center, directed by Dr. Barry Byrne at the University of Florida to support his research initiative.  Additionally, our foundation provided support to families in need, totaling nearly $4000.00.  

As we move forward into 2017, the Joshua Frase Foundation asks for your continued support.  JFF's goal is to raise $500,000 to support several pressing initiatives.

In addition, operationally, JFF will be building up our blog in order to raise awareness of CNM/MTM. As such, we are asking that the family please submit a family story and a picture if you would like to be included.  Please know this offer always remains open to our community.

However, while much was accomplished in 2016, much was also lost.  This past year alone, we are aware of 12  children within CNM/MTM community that succumbed to the mortality of this rare, orphan disease.  We will honor their lives, and the lives of so many others, by continuing to fight for a cure and several therapies.

2016 has certainly been a whirlwind of activity. None of our campaigns would be possible with out the continued support of our donors an researchers.  It is critical that we not lost sight of our vision. On behalf of our families, our researchers and the Joshua's of the world, we thank you for your faith in our cause.  

Always for the children,