In February I will be running what I refer to as the Triple
Crown at Disney World. The Triple Crown
is an unofficial challenge made up of the Frozen 5k, the Enchanted 10k and the
Princess Half Marathon on 3 consecutive days and includes the official Disney
Challenge of the Glass Slipper Challenge (the 10k and half marathon). I am running the Half Marathon on Sunday
February 22nd in celebration of a little Prince by the name of
Ryan.
Ryan is the son of two very special people (Robin and Daniel) who I am lucky to call friends. Ryan was born in May 2013 with a rare genetic disorder known as XLMTM (X-linked Myotubular Myopathy). XLMTM affects Ryan’s muscle tone and makes things that most of us take for granted (like eating and breathing) daily challenges. But with all the struggles he faces, Ryan still manages to thrive with a smile on his face.
There is hope on the horizon. Through testing and research a possible gene replacement therapy is showing promise and will hopefully be ready for clinical trials later this year. This groundbreaking research can only happen with the help of donations from others. As I run this race in celebration of Ryan, I will also be making a donation to the Joshua Frase Foundation to help further this research. I would like to challenge to you keep Ryan and his family in your prayers and if you are so led to consider donating to the Joshua Frase foundation as well. Please visit www.joshuafrase.org for more information about XLMTM and the research being conducted.
Your support and prayers can make a difference.
Ryan is the son of two very special people (Robin and Daniel) who I am lucky to call friends. Ryan was born in May 2013 with a rare genetic disorder known as XLMTM (X-linked Myotubular Myopathy). XLMTM affects Ryan’s muscle tone and makes things that most of us take for granted (like eating and breathing) daily challenges. But with all the struggles he faces, Ryan still manages to thrive with a smile on his face.
There is hope on the horizon. Through testing and research a possible gene replacement therapy is showing promise and will hopefully be ready for clinical trials later this year. This groundbreaking research can only happen with the help of donations from others. As I run this race in celebration of Ryan, I will also be making a donation to the Joshua Frase Foundation to help further this research. I would like to challenge to you keep Ryan and his family in your prayers and if you are so led to consider donating to the Joshua Frase foundation as well. Please visit www.joshuafrase.org for more information about XLMTM and the research being conducted.
Your support and prayers can make a difference.
This is Ryan
My running shirt for the Half Marathon
*I have no fund raising goal for this race, and this is not
an affiliated charity to the Disney Princess Weekend. I am sharing this to
increase awareness and prayers for a beautiful boy and to help further the
research that could help Ryan and others like him in the future.
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