- Team CHM’s World Champion
What length with a mother go to try and save her son’s sight? For Stephanie Sims that answer is 140.6 miles of swimming, biking and running at the 2017 IRONMAN World Championships in Kona, Hawaii.
Stephanie’s IRONMAN World Championship journey began in 2016, when she raced on Team CHM’s IRONMAN Wisconsin team, earning her entry to the coveted Kona race. For the last two years, Stephanie has spent countless hours training for these races and raising funds in support of the Choroideremia Research Foundation.
Stephanie’s journey to Kona on behalf of Team CHM was personal. She is a carrier of choroideremia and in addition to her father and other family members, Stephanie’s son Sullivan has CHM. Stephanie is racing for a reason: to make a difference in the fight to save Sullivan’s sight and the sight of others with CHM.
Stephanie, thank you for being our champion. Because of you, we are closer to finding treatment and a cure for CHM.
- Milwaukee Runs for Reason
A group of runners and walkers gathered on June 25th in Milwaukee for a unified reason: to raise funds to support the CRF and fund a cure for choroideremia.
It was a beautiful day to save sight as Risa and Sidra Berg led partipants through Milwaukee’s Historic Third Ward and Lakeshore State Park. Sidra completed this event in honor of her Bat Mitzvah, “I am trying to raise money/awareness about the cause because my uncle has CHM. It is important to know about CHM because someone you may know has it or someone you will meet has it. Even though not many people have CHM, it is still important to find a cure.”
Thank you, Risa and Sidra for your hard work and commitment to funding research that will find treatment and a cure for CHM. We greatly appreciate InStep Physical Therapy & Running Center for hosting this fun run!
To view photos from the event, visit Team CHM’s Facebook page.
- Racing for a Reason: Peter McConnell’s Story
Consistency counts. In training and fundraising for Team CHM, Peter McConnell found that consistency was the key to his success. Peter and his family ran a series of racing in Oklahoma in early 2017 culminating with the Oklahoma City Marathon, Relay and 5K on April 30th raising $1,650 to save sight and fund a cure for choroideremia.
Peter breaks down his success and how racing for Team CHM created hope and a sense of purpose and community:
1. How did it feel to achieve your race goal? What was it like to cross that finish line?
“It was awesome to see so many people out there to help me raise the funds and pass my goal! Crossing the finish line was one of the more humbling experiences I have had. To look over see my wife and kiddos there cheering me on and to be running across the line with what I would consider my brothers was awe-inspiring and made me very grateful for all in my life.”
2. How did you have success fundraising?
“Fundraising was a lot easier then I realized, thanks to social media and word of mouth. The key was to be consistent in sharing my message and to make ways available for all audiences and there were tons of people willing to give. Many more people than I knew had some kind of connection to eye-related issues in their own families so seeing Team CHM and the foundation being so active gave them hope and a way they could help!”
3. Were there any important lessons you took away from training for the race?
“Training requires consistency, awareness of your body’s limitation, and time. Time was a big part of it and my wife and kiddos were amazing with allowing me the time to do so and themselves being involved. Training also reminded me with my body it was okay to admit when there were days I needed to rest and be smart about things and I could relate that to how I function with CHM, knowing my limitations and being okay with what I can and can’t do and asking for help when I needed it!”
4. What surprised you most about racing for a cause?
“Racing for a cause really gave me a purpose. I have always wanted to find ways to connect to a cause of any sort, but finding Team CHM and a passionate way to give back to others and my own family (my brother, first cousin, and second cousin who is 16 all have CHM as well). This is a cause I will be a part of and find a way to be connected to the rest of my life. Knowing so many others care about this cause was very humbling and it made me very great for what I have in my life.”
5. What’s next? Will you keep running?
“Oh yes, we plan on running for lots of reasons and races. The running brought out a competitive nature I forgot I had so that was fun to reconnect with. I believe running helps the slowing of the loss of eyesight, I truly believe the better my health is the more I can slow down the progression of CHM and keep some vision longer. My wife Emily and my kids enjoyed being involved, spending race days together and wearing the shirts and Team CHM tattoos. I would love to connect with other Team CHMers to run a race together, maybe even getting some of you guys to OKC to run a relay here next year.”
6. What would you say to someone who is considering joining Team CHM?
“Totally do it! It’s so worth it and has helped to connect us with so many others who have similar stories and concerns. To know others out there are so passionate about the same cause, because they have it, or known someone who does is a universal, family feeling, even if we live thousands of miles away. I have connected with many involved with the CRF and Team CHM and my own experience in the clinical trial has truly opened my eyes and heart to the amazing people working hard to fight and stop this disease.
It is so worth being a part of and so rewarding in so many ways and it brings hope! It is very simple, very healthy, and very easy to do and brings so many amazing things to people like me who for a long time had no hope!”
- 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!