New Hope for a True Cure with CRISPR
Cure Rare Disease
We want the thank you for 15 amazing years of support and community turnout. Our 16th Hike for Hope, which we were going to hold on Saturday March 28 of this year but due to Covid 19, is on hold until we feel a more appropriate date will work.
We do have some wonderful news regarding Dr. Brian Tseng who departed from working directly with Muscular Dystrophy to work for Novartis Pharmaceuticals over 8 years ago. He (pictured above left with family and researchers at one of our early events) recently has taken a new position at Vertex Pharmaceuticals which acquired Exonics Therapeutics in June of 2019. Dr. Eric Olson (he is in the video above) is the founder of Exonics which is a biotechnology company focused on developing gene-editing technologies like CRISPR/Cas9 for Muscular Dystrophy specifically. With Vertex, Exonics, Dr. Olson, and Brian all working together we have more hope than ever before!!
You have all helped with this journey and as always we thank you for “MDing” and making a difference. We hope to send an email blast soon for our 16th Hike for Hope.
Please consider a donation towards ending MD.
Best to all,
The Sharp Family
Who are we?
We are parents of a son who has an incurable disease called Becker Muscular Dystrophy. Our mission is a grassroots effort to bring focus and research to DMD, Duchenne Muscular Dystrophy, the leading killer of young boys. Our son Ian has Becker Muscular Dystrophy which is a less severe form, but just as frightening. One in every 3500 boys are born with DMD. Every day two boys die of DMD. This is a genetic disorder, approximately 60% of the mutations are hereditary, but because it is random, most families don’t know of its existence. 40% of the time it occurs because of a spontaneous mutation at birth. Simply put this is a muscle wasting disease. The prognosis has been the same for years: Wheelchair by 9 – 12 and life expectancy between late teens and early twenties. IT CAN HAPPEN IN ANY FAMILY. We have learned that DMD is an “orphan” disease and that pharmaceutical companies do not invest in bringing cures to market because the number of end users does not make it profitable enough. So we have taken matters into our own hands and embarked on a path to affect change…to raise the funds needed to cure DMD and BMD in our son’s lifetime. 100% of the funds raised goes to cutting edge research. We hope that one day, no longer will young boys have to cry because they can’t keep up with their friends because their legs cramp, no longer will they need wheelchairs or have to go to a camp to feel and be “normal” and most importantly no longer die before they have a chance to really live! Our vision is to draw awareness to the fact that there are far too many incurable diseases killing our children, let’s put a stop to this now!!! With your help we can take a step for hope,take a step to cure, take a step because we can.
You should know that every penny of your gift goes directly to the research lab and no funds are to be diverted for paying indirect costs or institutional overhead. That means 100% of the money raised goes to research. All expenses are donated. No payrolls. No profits. Your dollars go directly to the lab to help find a cure.
Hike for Hope is operating under the HIKE FOR HOPE FOUNDATION INC
936 W Francis St., Aspen, CO. 81611
Tax-exempt 501 (c)(3)
Tax ID 20-3596738