Welcome Team CHM post

Team CHM raises critical funds to find a cure for Choroideremia (CHM), an inherited eye disease that leads to blindness.  If you are a competitive athlete, a weekend warrior, or just want to make your way across the finish line of your first 5k – joining Team CHM is a perfect way to raise money to End Blindness caused by CHM while taking on a personal athletic challenge.

Over $20,000 Raised by Team CHM at the Philadelphia Marathon

Sharyl & Danny Philly Marathon 4
The Philadelphia Marathon on November 23, 2014 was an epic event, and a massive success for Team CHM. With the race taking place only 2 miles from where the forthcoming CHM Gene Therapy is expected to begin shortly – it was a celebration of perseverance, commitment, and a belief in our ability to find a cure for Choroideremia.

In the days leading up to the race, Philadelphia’s temperatures hovered in the mid-20’s and all runners hoped that the forecasts for warmer weather on race day would prove true. When race day came, it looked like the predictions would be right – and that the cool morning would warm into the 50’s for perfect race day weather.

IMG_4994 It was a party atmosphere with so many CHM families and friends around. Racing the full marathon were Rhonda Timko, Sharyl & Danny Boren, and Jeff Benelli – who was wrapping up his 4th marathon in only 5 weeks . . . an almost super-human effort. The 1/2 marathon field featured CRF President Chris Moen and Alis Moen (each taking part in their first half marathon ever!), Jerry Timko, Virginia Timko, Wendy Gradwohl, Randy Wheelock, and Jodi McLaughlin – who was just 7 days off of completing her first full Ironman Triathlon in Tempe, Arizona. Joining the 1/2 Marathon crowd was Dr. Al Maguire – former collegiate runner and the renown UPenn Retinal Surgeon who will be performing the first ever U.S. gene therapy surgeries to treat CHM as part of the upcoming clinical trials. All totaled there were 12 runners for Team CHM in either the 1/2 or the full Philly Marathon! Cheering on the dozen Team CHM runners were CRF Executive Director Eric Hartman, CRF Operations Manager Cory MacDonald, Julie Benelli and her parents, Max Timko, and Dr. Jean Bennett!

TVirginia Timko Philly half Marathonhere were 30,000 runners participating in the event, so when the starting gun went off all but the professionals at the front were still standing in place. The race began by “Corral” and as each of these groups of many thousands of runners would reach the starting line they would get their own start announced. Many Team CHM runners didn’t cross the starting line for 30 min. after the official race gun went off – but once across the line a game of human pinball began. Bumping and bouncing off of other runners who were on all sides – Team CHM racers started making forward progress. In the front of the pack was Jeff Benelli – who was significantly slowed down by the masses of people and the difficulty in navigating the crowds – but Jeff was none-the-less in the front of the full marathon contingent. Dr. Al Maguire was the lead 1/2 marathon runner for Team CHM – flying down the road at a 7:25 per mile pace. Not far behind were Wendy Gradwohl and Jodi McLaughlin each holding a sub-9 minute per mile pace. Much like a “mullet” haircut – the marathon was “Business in the front – party in the back”. On the other end of the marathon and 1/2 marathon crowd Team CHMers held their paces and chatted with others in the field, occasionally careening off to the edges of the course for “high-5’s” from spectators.

IMG_5026The race course took the athletes down Benjamin Franklin Boulevard – beginning and ending in front of the famous “Rocky Steps” that lead to the Museum of Art. The runners passed by LOVE Park, the Liberty Bell, and City Hall – all before the first 6 miles were through! The pack then made the first of four crossings of the Schuylkill River as they entered the area of Philly known as University City. From there it was on into Fairmount Park before turning back toward the starting area.

Passing by the Museum of Art, after crossing back over the river, 1/2 Marathon runners edged right toward the finish line and full marathoners stayed left . . . while wishing themselves another 13.1 miles further down the road where they too would be able to raise their arms in victory as they crossed the finish line.

635527838492023645The second half of the marathon was significantly less chaotic than the first half. With a majority of the runners heading in after 13.1 miles the marathon crowd was down to just over 10,000 racers out on the road. The course followed the Schuylkill River out to the town of Manayunk before turning to head back toward the finish. Jeff Benelli stayed out in front of the Team CHM runners, and Rhonda Timko held her pace throughout the entire 26.2 miles. Sharyl Boren – in her first ever full marathon – found “The Wall” between mile 18 and 19. She and Danny plugged along over the last grueling 7.2 miles – keeping one foot going in front of the other – well below their target pace, but still headed continuously toward the finish.

Sharyl & Danny Philly Marathon 13 - Best 2Back in the finish area Team CHM 1/2 marathon racers were pouring across the line – first in was Dr. Al Mcguire, next was Wendy Gradwohl, then Jodi McLaughlin, followed by Virginia Timko, Chris & Alis Moen, Jerry Timko, and finally Randy Wheelock wrapped up the 1/2 marathon contingent. Soon thereafter the Team CHM full marathoners began crossing the line. First in Jeff Benelli raised his hands high, celebrating a remarkable endeavor that had taken him through 4 different 26.2 mile journeys on foot in the previous 5 weeks. Next Rhonda Timko crossed – marking the completion of an awesome fundraising effort put together by the entire Timko family, and a great race day performance that she had trained many months to prepare for. Sharyl & Danny Boren wrapped up the Team CHM finishers – crossing hand-in-hand after an incredible journey through Ironman Arizona the previous weekend and now Sharyl’s first full marathon in downtown Philly.

Team Timko Philly MarathonSpark Therapeutics, the new pharmaceutical company behind the CHM Gene Therapy due to start shortly in Philadelphia, hosted a party for the Team CHM racers at their new headquarters. Everyone celebrated with drinks and great conversation between CHM family members, leading CHM researchers, and the Spark Therapeutics team. Ed & Marion Scott drove down to join everyone at the party and congratulate the Philadelphia Marathoners who together had raised over $20,000 to cure CHM!


Philly Marathon story image 2CLICK HERE to Watch the NBC10 Interview with Jeff Benelli & Danny Boren which aired on Race morning in Philadelphia

Team CHM raises over $82,000 at Ironman Arizona

Ironman AZ 2014 SwimAt 7:00 am on November 16th in Tempe, Arizona a cannon was fired, and 3000 people began swimming at once – heading off on a 140.6-mile journey on a day none of them would ever forget. Amid the 3000 bodies thrashing in the murky waters of Tempe Town Lake were Team CHM members Jodi McLaughlin, Shannon Hamlett, and Stacey Dayley from Alaska – and Danny Boren from Hawaii. Together the team had raised a combined $82,225 to find a cure for blindness caused by Choroideremia, and this was the day to show their many supporters that nothing would stop them from reaching their goal.

The Ironman Triathlon is considered to be the Hardest Day In Sports and with 2.4 miles of swimming, 112 miles of biking, and a full marathon – 26.2 miles of running, all before midnight, it is an event few will ever attempt, and even fewer will ever finish. Except for Stacey Dayley this was the first Ironman Triathlon for all Team CHM members, and it was a day that took a full year of training to prepare for.

The swim took the athletes directly into the rising sun, and Danny was fortunate to find many patches of open water amid the chaos where he could swim with only a minimum of contact with other athletes. Jodi was not as fortunate, taking a few strong hits in the first half of the swim – her only reprieve was spotting her family on the shore and getting a bump of energy when they waved back at her. After the first 1.2 miles the swim course looped back in the direction of the start, and soon after that turn Danny took a direct kick to his goggle from the heal of someone swimming breast-stroke – an illegal stroke in triathlon due to the potential damage of a straight kick. After reorienting himself and resetting his goggles, Danny started off swimming again.

Ironman athletes are given 2 hours and 20 minutes to make it through the swim – but everyone on Team CHM was well ahead of the cut off time. Jodi was the first Team CHM athlete out of the water in a blazing fast 1:07:48 – placing her 8th in her division after the swim. Next out of the lake in 1:12:27 was Shannon, followed immediately by Danny in 1:12:58.

0823_013442In the constant battle of the swim Jodi had lost her watch at some point, so she started out onto the bike course without knowing how well she was doing. Just behind her Danny and Shannon both hit the road on their bikes, with Danny now ahead of Shannon by just over 2 minutes thanks to a relatively fast transition from swim to bike.

The sun was beginning to warm up the cool morning temperatures by 8:30 am – when Stacey got out of the water and raced into transition after the three other Team CHM athletes who were already beginning to put the first few miles of the bike leg behind them.

Out on the road Jodi made the left hand turn off of Rio Salado Blvd. and became the first Team CHM athlete to suddenly discover what this day was going to be like. At that corner riders made the first move that would take them directly into the wind – a wind that was far worse than anyone could have predicted. 0823_021232The wind threatened to turn the long, sustained, 112-mile effort required of the bike leg into a painful grind against the elements for every mile. With head on wind speeds exceeding 25 mph, athletes tucked into aero position and began dipping into their energy reserves in order to maintain any semblance of “race pace”.

Expecting to average 20 mph throughout the ride, Danny looked down at his bike’s speedometer and grit his teeth trying to maintain 11 mph into the wind. The bike course was three loops of just over 37 miles each, and every time Jodi, Shannon, Stacey, or Danny would pass near the turnaround they would each get a blast of energy and encouragement from their family and friends . . . while Ironman might throw a new obstacle at the racers at anytime, one thing was certain – Team CHM Bike CheeringTeam CHM had the BEST cheering squad at the race!

As each team member slogged through the miles on the bike course the monotony and torturous wind was broken, periodically, by aid stations serving up a wide array of energy drinks, performance gels, and bars. Each aid station was an exercise in chaos as riders swerved in to grab bottles, while others veered away from trash strewn over the road from failed hand off attempts. At around mile 60 Shannon was passing an aid station and headed back toward town and another boost of energy from the Team CHM support crew, when her race suddenly changed. As she sped downwind at over 20 mph, another racer swerved out from the aid station area and caught Shannon’s back wheel with his front wheel. Both athletes crashed hard.

image-2Shannon, with feet still clipped into her peddles, hit the asphalt first with her hip and then with her head. She was on the side of the road covered in blood when Stacey rode past. Stacey quickly noticed the TEAM CHM outfit and pulled over to see who had crashed and what had happened.   When Stacey saw Shannon, who was being checked out by medical personnel, she knew that this was the moment of truth for Shannon. After a year of dedicated training, one bad move by a competitor was about to cost Shannon her dream of becoming an Ironman. As an Ironman veteran, Stacey knew that Shannon’s injuries would heal – but the impact from not finishing was something that would be far more painful and harder to recover from. Stacey looked Shannon in the eye and said, “Do you want to finish this race?” Shannon said that she did. So Stacey said “alright, then let’s get your bike checked out to make sure it’s still in ride-able condition and then let’s get going.” For the next 50 miles Stacey stayed right by Shannon. The pair rode together, with Stacey regularly asking Shannon how she was feeling, and looking for any potential signs of trouble.

Jodi biking and wavingJust as with the swim, Jodi was first into transition off the bike and quickly made her way on to the marathon, 26.2 miles of running to finish off the day. A few minutes later Danny pulled into transition. As he got off his bike he could barely stand up. After 6 hours and 30 minutes of pushing hard on the bike, Danny felt like he had just gotten off a boat, and he stumbled into transition. The lack of balance rectified itself after about a minute – it was an odd sensation as his balance was fine on the bike, but his legs had seemingly forgotten how to walk. Once the running shoes were on and balance was back to normal Danny started his marathon. With legs that were fried from a much higher than expected bike exertion against the winds, Danny’s run pace was well off of his target.

Less than one mile into the run, Jodi passed the Team CHM tent for the first of four times during the marathon. It was an incredible moment – seeing her husband Sean, daughters Molly & Megan, and her mom Sue – along with everyone else there cheering her on. Molly jumped in and ran with her mom for a few minutes, giving Jodi extra power for the miles ahead. But even with that major emotional lift, Jodi was already fighting an upset stomach that threatened to derail her race.

0823_063422The run course was two laps, but covered various parts of the route in an out and back fashion. Just before mile 2 Danny spotted Jodi heading the other direction – representing a lead of just over a mile. With a quick “Go Team CHM!” shouted from across the trails they each kept the forward progress going. Eventually Shannon & Stacey rode into Transition, having survived the remainder of the bike without further incident, and they each began their marathons about 7 miles behind Jodi who was still leading Team CHM.

At mile 12, Danny’s run had become a pained shuffle, but he stubbornly refused to succumb to walking. Then ahead he spotted Jodi, she was clearly in pain but still running. Once he caught up, Danny and Jodi ran about a ¼ mile together, but Jodi’s stomach was setting her back – after over 10 hours of constant forward motion and a diet of only energy drinks and gels her digestive tract was fighting her harder than the sore muscles were. So at just about half way through the marathon Danny pulled slowly ahead.

image-3With a 2:14:13 on the first half of the marathon Danny entered the last 13.1 miles of the race, and as he passed the Team CHM tent for the third time his wife Sharyl jumped in to run with him for a while. As they ran along Sharyl and Danny came across another Ironman racer who was handing out Fun Size Snickers bars from a large bag. It turned out the guy was a 10-time Ironman veteran and he said that Snickers was his secret race fuel, even so Danny declined the offer. Soon after an Ironman official told Sharyl she could not run on the course, so she peeled off and headed back to the Team CHM tent.

The sun had set, but the racers kept on moving. At mile 18 Danny’s cousin Tom jumped in as Danny’s official Guide. As a legally blind athlete in the Physically Challenged division, Danny was allowed to have a guide during the hours after dark. Tom had an ankle band with bright flashing lights that Danny followed for the last 8 miles. Through most of the final miles Danny had to run and then walk periodically. With a complete level of physical exhaustion – it is said that an Ironman only begins during the back half of the marathon. This is a time where every step forward is it’s own victory, and some of those steps come slow, others a little faster.

Ironman Finish hug!After 12:53:09 of racing Danny crossed the finish line, and claimed 2nd in the Physically Challenged division. Right at the finish was Sharyl to share in the moment that was a year in the making. Training for the race had taken Danny through 3334 miles of biking, 628 miles of running, and 78 miles of swimming in the prior 11 months and he had spent over 335 hours in the water, on a bike or out running. Training for Ironman takes limitless love and support from family and friends for all those hours and miles away – and the finish line is the celebration of reaching the end, of making that effort worth it.

A few minutes later Jodi crossed the line, finishing in 13:06:06 and placing her in the top 25% of her age-group. Jodi’s training had been just as rigorous as Danny’s – and she celebrated with big hugs from Sean, Molly, Megan and Sue for completing this lifetime goal. Shortly after finishing Jodi went to the medical tent feeling dizzy and nauseous, and they kept her there for well over an hour, feeding her chicken broth and watching her blood pressure, which was extremely low.

Next in was Shannon – a true Ironman, having recovered from a serious bike wreck, finished another 50 miles on the bike and then tackling a full marathon. After celebrating with her family, Shannon headed to the Medical tent to join Jodi – who was still being monitored but was laughing with her sister-in-law who was there keeping her company as the pair observed the craziness that only an Ironman medical tent can deliver.

Stacey came in after 14:34:38 – bringing the Team CHM finishing percentage up to 100%. It was after 9:30 pm, and the race had started at 7 am. It was a long day that showed everyone what Team CHM is made of.

Run 4 a Reason raises $2700 on Thanksgiving!

In the hours before the big Thanksgiving feast, racers taking part in the 3rd annual Run 4 a Reason lined up in Long Lake, Minnesota.  This was the 3rd year in a row that Jan Laudenbach and family had put on this great event to raise money for Choroideremia Research.  The group raised over $2700 this year, building on a great track record of success.  And everyone racing that day earned their Thanksgiving dinner, while simultaneously giving the CHM community another something to be thankful for!