On the 4th of July Alan Trowhill took on The Liberty 5k – his first ever running event.
Alan set a personal best time with a sub 11 minute per mile pace. Even more impressive, Alan has raised over $4000 through his running all going toward curing Choroideremia! Next up Alan will join with other Team CHM members in the Hartford, CT – Run or Dye 5k! Show your support for Alan’s efforts by Clicking HERE to Make a Donation!
On the Last weekend in June – Team CHM took on three different events at The Pacific Crest Sports Festival all in an effort to End Blindness caused by Choroideremia.
The first event of the race weekend was the Pacific Crest 1/2 Marathon – 13.1 miles of running through Sun River, OR. Sharyl Boren & Tallis Clarkson set out on the run through the forest and along the edges of the Deschuttes river at 8 am. Saturday Morning.
Next up was Danny Boren’s race beginning at 9 am. the Long Course Triathlon – a 1/2 Iron Distance race – which entails a 1.2 mile open water swim, a 58 mile bike ride, and a 13.1 mile run . . . the same run that Sharyl & Tallis were already doing miles away from the swim start. The swim took Danny around Wickiup Reserviour, before jumping on his bike and peddling up and around Mt. Bachelor, climbing over 2600 feet in elevation along the way.
Meanwhile back in Sun River Sharyl & Tallis were blazing through the hard miles of the run and already thinking ahead to the Deschutes Beer Garden that awaited them at the finish line. About the time the 1/2 Marathon was wrapping up Danny was somewhere along Cascade Lakes Highway moving at a crawl up the slopes of Mt. Bachelor and wondering how he was going to make it through the run portion after he eventually finished the bike.
Everyone ended up finishing well – Danny came in at 6:02:51 missing his goal of going under 6 hours mainly due to getting lost on the run and clocking an additional 1/2 mile of off course running (thanks to CHM and not seeing a sign to turn left!). Click Here to visit the Team CHM Blog for the full race report.
First thing the next morning Sharyl & Danny joined up with Buck & Marcy Boren at the Pacific Crest 5k event. The route again followed bike paths through the forest of Sun River ending right in the town center. All totaled the Team raised more than $1000 for Choroideremia Research at the Pacific Crest Sports Festival 2014!
Support the Pacific Crest Sports Festival Team by Clicking Here to Make a Donation.
Choroideremia (CHM) is a rare inherited disorder that causes progressive vision loss, ultimately leading to blindness.
(release date: January 2014) The first clinical trial of a gene therapy for an inherited cause of progressive blindness called choroideremia has shown very promising initial results, surpassing the expectations of the researchers involved. Professor Robert MacLaren of the Nuffield Laboratory of Ophthalmology (part of the Nuffield Department of Clinical Neurosciences) led the development of the retinal gene therapy and this first clinical trial. Click here to read the rest of the Oxford Press Release
The Choroideremia Research Foundation provided critical early funding to Dr. Miguel Seabra, a key collaborator on this Gene Therapy trial, helping to pave the way for this exciting breakthrough.
A report from the journal Nature published on June 10, 2014 has shown that doctors at Johns Hopkins University School of Medicine have succeeded in generating three dimensional retinal tissue from induced pluripotent stem cells (iPS Cells), which are generated from a patient’s skin sample. This work was done in collaboration with Dr. David Gamm out of the University of Wisconsin, a Choroideremia Research Foundation Funded researcher.
Stem Cells are believed to hold the potential to restore some level of lost vision for individuals in the advanced stages of retinal degenerative disease like Choroideremia.
Click Here to read the NBC News story about this breakthrough
Click Here to read the Original article in the Journal Nature
Surgeons in Oxford have used a gene therapy technique to improve the vision of six patients who would otherwise have gone blind.
Click Here to Watch the Video from the BBC
In cooperation with the CRF, EJ Scott, Deborah Ann Woll and HBO, Charity Buzz has just posted an auction to win two tickets and After Party passes to HBO’s True Blood Final Season premiere with Deborah Ann Woll on June 17, in Los Angeles. And, not only do you get to attend and have a great time, but this prize includes an opportunity of meeting EJ Scott’s girlfriend and actress, Deborah Ann Woll, who plays Jessica Hamby on True Blood. Click here for the auction page to track the bidding and place a bid, or click here to visit EJ Scott’s website to read more information! Thanks to EJ, Deborah and HBO!