New Hope for a True Cure with CRISPR
Cure Rare Disease
These are indeed challenging times for us all. We did not hold our 16th Hike for Hope blast last year in March due to Covid 19 but we are asking you to join us for our 17th this Sunday, February 28th as it is also Rare Disease Day.
We are very excited to share some wonderful news and update all of you caring supporters on what has been happening in the world of rare diseases just in the past year.
We welcome Dr. Brian Tseng back into the Muscular Dystrophy arena with wide-open arms!! Many of you will remember Brian and his family who attended the Hike for Hope many times. Brian who departed from working directly with Muscular Dystrophy has recently 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!!
We have also teamed up with a truly impressive, if not remarkable non-profit Cure Rare Disease. Rich Horgan, his family, and his team are our future for actual treatment for Muscular Dystrophy and other rare diseases with individually customized therapeutics using CRISPR/Cas9 technology. We hope you will take a moment to watch the video above of this exciting story one which all of you are part of and for that we thank you. We will be watching Terry receive his exon 1 sometime in Q3 of this year and if all goes as his lab results show his dystrophin gene will be intact and repaired. What a hopeful story in such unpredictable times.
In times like this, we’re reminded of how interconnected we all are and we thank you for “MDing” and making a difference. We are asking you all to send positive thoughts on Hike for Hope and Rare Disease Day to end as many rare disease journeys as possible. We know this is an extremely difficult time and we hope you enjoy quality time with your loved ones and family this coming Sunday.
If you choose to make a donation 100% of your donation will go directly to support CRISPR Technology and the work being done with the Cure Rare Disease team.
How will you “MD” and help us to continue to MAKE a DIFFERENCE? Please share what special event you have on our Facebook page.
A HUGE thank you to those of you who have already so generously donated. Your continued support of our goal means so much to so many!
There are no words that can adequately express how grateful and thankful we are for such a thoughtful, supportive and amazing community!
With endless thanks and gratitude,
Carole, Bob, Ian, and Ty Sharp
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 go 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)
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