Sioux Falls Skedaddle Half Marathon
Beau & JeanAnn Bryan have teamed up with Skechers Performance Athletes Benson Langat & Derrick Ettel in a fundraising effort for their 2 boys, Sawyer & Wesley. The fundraiser is titled “Chase for a Cure” and is made possible through generous partnership with the 605 Running Company. Proceeds will go directly to Cure Rare Disease; a 501©(3) nonprofit based out of Boston MA that is leading a nationwide collaboration of researchers and clinicians in order to develop customized therapeutics for rare diseases.
Both Benson & Derrick will begin their Skedaddle half marathon starting 5 minutes after the start of the race. Their challenge is to connect with as many runners as possible in efforts to finish with top marks and raise funds for Sawyer & Wesley. The fund raising goal is $25,000.
****We are currently seeking sponsors or individuals that will match $1-2 for every runner Benson and Derrick connect with during The Sioux Falls Skedaddle Half Marathon. To commit to this sponsorship contact Greg Koch at firstname.lastname@example.org.
Bryan Boys Story
Sawyer (10) & Wesley (7) Bryan, of Tea, were recently diagnosed with Duchenne Muscular Dystrophy (DMD), a rare progressive muscle loss disease. “Bryan Boys for Hope” is the title created by the Bryan family to raise awareness, education and drive funding in support of a customized therapeutic for both boys. The Bryan’s have aligned themselves with a Boston based non-profit called Cure Rare Disease (CRD).
DMD is the most common fatal genetic disorder diagnosed in childhood affecting 1 in every 3,500 male births. There is currently no cure for Duchenne Muscular Dystrophy. The dystrophin gene is the largest known human gene and it provides instructions for making the protein dystrophin, which holds muscles together and helps maintain function. This gene fits together like a long string of 79 puzzle pieces. Any one duplication, deletion or error in the sequence can stop the protein from being produced. Boys with Duchenne lose muscle throughout their life and typically lose the ability to walk between ages 10-12 and normally do not survive their mid-twenties. The diagnosis of DMD runs on a spectrum with some seeing symptoms and hardships very early on and others showing struggles later in time.
The Bryan’s current routine involves daily steroids, supplements, muscles stretches, strict diets, leg splints, bi-weekly physical therapy and a whole lot of Love and Prayer. A muscle biopsy was recently completed for Sawyer at the University of Massachusetts and a prototype capable or repairing the gene discrepancy is underway at SickKids Hospital in Toronto.
You can follow the Bryan family by searching ”Bryan Boys for Hope” on Facebook and Instagram and more can be learned about CRD by visiting cureraredisease.org.
Cure Rare Disease
The mission of Cure Rare Disease is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians in partnership with generous donors. Customized therapeutics are designed specifically for individuals who continue to fight for their right to live long, full, healthy lives despite having been diagnosed with a rare genetic disorder for which they have been told there is no treatment or cure. Having a rare genetic mutation means you’re left behind by the pipelines of established biotech companies who remain focused on treatments that impact the greatest numbers of patients. Technologies exist to create customized treatments, known as n=1 therapies, that target each patient’s unique genetic error. CRD currently has partnerships and on-going work with UMASS Medical School, Yale University School of Medicine and SickKids Hospital in Toronto.., just to name a few.
For patients with Duchenne muscular dystrophy, CRISPR technology offers one of the greatest opportunities to restore the dystrophin protein to muscles by editing the DMD gene. Researchers have discovered how to harness this mechanism by programming CRISPR to act as “molecular scissors”, deleting or replacing strands of mutated DNA in order to modify gene function. In the case of DMD, it can be used to restore the ability of the DMD gene to produce dystrophin. CRISPR has also been proven effective in sickle cell disease and beta thalassemia and has the potential to have a positive impact on many more diseases.