- Dennis Sims’ Reason to Run
My son Brett is 35 and has choroideremia (CHM). It’s hard to explain how difficult that was for our family to hear that diagnosis when he was 5 or 6. As a parent, I just tried to keep things as normal as I could for Brett. With Brett being part of the first Gene Therapy trials, we have had a chance to spend some real quality time together and we have met so many amazing people — people that are part of the trials, people with CHM and their families, and Team CHMers.
I am not a very outgoing person, but being part of this amazing CHM family has been a bit of a blessing, and helped me be a little more comfortable with people. That being said, it goes without saying that I wish Brett’s eyes were normal. With all the good news in treatments and research, and brave men like Brett, we will end this disease.
When Brett began running and did a fundraiser with Team CHM by running a half marathon in Philadelphia, I thought maybe I could do something like that too. Sports has always been a big part of my life, and being part of something like Team CHM and raising money for this unfortunate disease has been inspiring, fun, and important for many reasons. Getting close to retirement, I wanted to try to get in better shape. It seemed like a good fit and something I could do to help just a little. Brett has been a huge for inspiration for me. We must stop this disease for our young CHMers.
Being able to finish and cross the finish line will feel incredible. It will be an accomplishment I will be extremely proud of. I never thought I would be able to run again due to age and knee issues. To be able to run 13.1 miles seemed impossible a year ago, so to finish may just bring tears to my eyes. To be able to run this with my son and other Team CHMers, and to be part of Team CHM is truly an honor.
Cheer on Dennis and Brett and support the Sims as they race for a reason, to find a cure for CHM: https://donate.curechm.org/fundraise?fcid=873801
- 5th Annual Eye Believe Concert!
For the 5th year in a row, the Calhoun and Looney families organized Eye Believe, a benefit concert for the CRF. Almost 100 people gathered together on March 5th at The Hope House in Nashville, TN for an afternoon of music performed by twelve musical acts, all talented young musicians from the Nashville area.
Attendees donated and purchased various items during the show. This year, Eye Believe raised over $10,000! In the five years the Calhoun and Looney families have been hosting the Eye Believe concert, they have raised over $40,000! Our thanks to the Calhoun and Looney families, the musicians who donated their time and talents and to the attendees and supporters of Eye Believe! We’ll see you next year!
- Thanksgiving Gratitude: Laudenbachs Run 4 A Reason
We greatly appreciate the Laudenbachs for their continued efforts to give back and make a difference each Thanksgiving. They truly embody the spirit of the holiday season.
Visit the Team CHM Facebook page for photos from the Laudenbach’s race.
- IRONMAN Racers Raise Over $65,000 for CHM
On September 11th a group of inspiring athletes participated in IRONMAN Wisconsin to push themselves to their physical limits while impacting the lives of those facing choroideremia. While swimming, biking, and running 140.6 miles is challenging enough, these athletes took on an ever greater challenge: saving sight.
Nine athletes toed the starting line for Team CHM and raised over $65,000 to fund treatments and a cure for CHM.
Team member Stephanie Sims earned an entry to IRONMAN’s World Championship in October of 2017 as Team CHM’s top fundraiser, raising over $12,000 to impact her family and the lives of all effected by choroideremia.
Highlights from the weekend outside of cheering our exceptional athletes on to the finish include a presentation from CRF-funded researcher Dr. David Gamm at the Team CHM dinner and a presentation by Dr. Chris Moen of Team CHM’s video to all IRONMAN athletes at the event’s Welcome Banquet.
Photos from the weekend are available on Team CHM’s Facebook page, include scenes from Team CHM’s journey to save sight on the run course at IRONMAN Wisconsin and the morning swim and transition to bike course.
A big thank you to each of our athletes for providing hope and raising critical funds to find a cure. Your many miles of training and racing over the past year make a difference. Special thanks to Brandon Becker, Connor Miller, Dan Peterson, and Brett Sims for volunteering with Team CHM throughout the weekend.
- Racers Raise $10,000 at Rock ‘n Sole Milwaukee
Team CHM’s journey to save sight at Rock ‘n Sole Milwaukee brought us many steps closer to a treatment and a cure for CHM. Team members raised over $10,000 while conquering the heat and half marathon, quarter marathon, or 5K distances.
Over 20 Team CHMers laced up their sneakers for a reason. Racer Barb Cameron set an ambitious goal of racing for a reason and gathering a group of friends and family to join her for a very special reason:
“I am committing to run the Rock ‘n Sole Half Marathon on Saturday, June 11th for the CRF. I know it will not be easy and I will have to train long and hard to do this but I personally want to challenge myself.
OKAY, here are some of the thoughts running through my head… in the last 2-1/2 years I have had to depend on others for many things, including rides. But this is something I can still do by myself… just put on running shoes and run. I want to do this for independence, strength and confidence in myself as much as it is for the CRF.”
In addition to racing, Team CHM had a dedicated group of volunteers join us on race day, manning an aid station during the race, keeping athletes hydrated while showing off their Team CHM pride.
See more photos from the race on Team CHM’s Facebook page.
- Eye Believe Raises $8,000!
On Sunday, March 6th, over 100 people gathered at the Factory of Franklin in Franklin TN to take part in the 4th Annual “Eye Believe” Concert. Twelve high school age performers entertained the crowd while raising over $8,000!
The 4th Annual Eye Believe was hosted by high-schoolers Daniel and Sarah Ashby Calhoun and was a huge success! For four years the Calhoun children have coordinated an acoustic musical event in honor of their 15 year old cousin, Sam Looney, diagnosed with Choroideremia several years ago. After learning of Sam’s diagnosis, the Calhoun family decided to utilize their talents and coordinate this musical event.
The kids did most of the work, including Daniel emceeing the event. Living close to Nashville, the family is connected with many friends who are children of famous songwriters and performers. The children of these individuals have amazing talent themselves. In four years the event has raised close to $30,000!
- Cure in Sight tops $29k! On Saturday, October 10, over 100 people gathered at the Delaware Center for Horticulture in Wilmington, DE to participate in the Moen Family’s 5th Annual “Cure in Sight” Wine Tasting & Silent Auction. Attendees enjoyed live music, samples of several fine wines, snacked on gourmet foods, bid on auction items and were treated to a viewing of the CRF’s “Saving Sight” documentary.
Several CHMers attended to support the event. Three of them, who all spoke at the event, are participants in the ongoing gene therapy trials at UPenn. CRF President Chris Moen & his wife Alis also addressed the packed house. It was an enjoyable and inspirational evening for the attendees, which resulted in the Moen’s raising over $29,000!
Our thanks to the Moen family, the volunteers and all those who sponsored and attended “Cure in Sight”! We’ll see you next year!
- Dining in the Dark Raises Over $14,000!
On July 25th, almost 100 attendees gathered at the Castle of Knights in Chicopee, MA for Dining in the Dark! Attendees were given complimentary sleep masks to wear while dining, simulating what it’s like for someone without sight to eat dinner. It was truly an eye opening experience for many! Great live music was provided by CHMer Steve Volkmann and his friend Bobby.
The event was emcee’d by Brett Provo from WMAS radio and also included the World Premiere of the docu-short “Saving Sight“, a Silent Auction, 50/50 Raffle & a Raffle of an Embassy Suites 2 night getaway package in Boston. A large amount of awareness was raised along with over $14,000 to support the mission of the CRF! Thanks to the attendees, our sponsors and volunteers who made this event such a success! We hope to see you next year at Dining in the Dark II!
- Team CHM raises over $15,000 at Escape From Alcatraz Triathlon
At 7 am. on June 7th, six Team CHM athletes dove into the 55 degree waters of San Francisco Bay. Leaping from the Horn Blower ship where 2000 athletes, all exiting in under 8 min. When they splashed down into the icy waters they were just off the shore of the infamous Alcatraz Island – from there the athletes had a 1.5 mile open water swim, through rough waters and strong currents to make it to shore. Swimming through the bay, I had to pause and look at Alcatraz from the water – a perspective that few people have the opportunity to experience . . . this is what it is like to ESCAPE from Alcatraz!
Once on the shore, it was a 1/2 mile run over to the transition area, where we all jumped on our bikes. The bike course was spectacular – with many significant climbs, sharp turns, and incredible views. Over the 18 mile bike course there were a number of crashes due to the difficult and technical nature of the ride. As a legally blind athlete I was taking it easy, and putting safety first. Team CHMer’s Clay Macfarlane & Zach Luterman were leading the pack when they hit the bike to run transition. The run at Escape From Alcatraz is more obstacle course at times than it is traditional running race. After a flat and fast trail out for the first two miles of the run, the first set of stairs loom in front of you. These are no normal stairs either, they are railroad ties formed into a staircase that quickly ascends more than 100 vertical feet. From the top of the stairs the hill keeps heading up eventually hitting 250 feet of climbing. From there it is a straight sprint on a dirt trail down to Baker Beach, where racers run the length of the beach, though the sand and under fishing lines. That’s when racers encounter the dreaded “Sand Ladder”. Ascending 400 sand stairs (wood posts laying in the sand are cabled together, with sand covering them making them loosely resemble stairs), athletes have the last of their energy fully drained. Thankfully once athletes hit the top of the sand ladder it is all flat or downhill to the finish.
A Major thank you to Team CHMers who conquered this epic race – Donna Gelnett, Clay Macfarlane, Zack Luterman, Jamie Kris, and Brad Haines. Each one of them put their heart into their race day effort. And thanks to their generousity and awesome fundraising – together the team was able to raise $15,365 to help cure blindness caused by Choroideremia!
- Ostoberfest Raises $45,000!
On May 31st, over 150 attendees gathered together at the Roger Robach Community Center in Rochester, NY to celebrate what has become a tradition in the upstate New York area: Ostoberfest! Hosted by the Oster Family, attendees to this Mardi Gras themed event were treated to live Zydeco music, New Orleans cuisine, local craft beers and a selection of regional wines while bidding on Silent Auction items.Donations are still coming in but it is safe to say this event has raised OVER $45,000 to help fund the research that will bring an end to Choroideremia! Our deepest thanks to John Oster, his wife Loron and the entire Oster family for once again putting on an amazing event! To say the Oster family knows how to throw a party is a vast understatement and they once again proved it to be true. Again, many thanks and congratulations!