A very big “Thanks”!

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Posted 26 Nov 2011 — by liz
Category Cause

Given the Thanksgiving holiday we figured it was high time to give thanks to everyone who has contributed to Run America – both in dollars and sweat!  Our apologies for the time that has passed since our last update, but it was worth the wait as we have some incredible news that became public this past summer: “Entrepreneur and philanthropist Philip Saunders made history with his donation of $10 million to the neuromuscular disease program of the UR Medical Center — one of the largest gifts in the institution’s history.”

Neurologist and Director of the Neuromuscular Disease Center Richard Moxley, who has worked closely with Barry for many years, was the first to get the great news and commented that “we have targeted myotonic dystrophy because it has the greatest promise of being a disease that we can reverse.”   The story of how this came about is worth a read (link at bottom) and the stories that may come out of it will surely bring many more “thanks givings” in the years to come.

No news yet on Run America V but we’ll keep everyone posted! A happy, healthy holiday season to all.

Link to story: http://www.myotonic.org/community/latest-news/urmc-receives-10-million-for-myotonic-dystrophy-research/

Research Funding Dramatically Increased

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Posted 12 Dec 2010 — by liz
Category Cause

Recently, Dr. Charles Thornton from the University of Rochester Medical Center, who leading the research team our fund-raising efforts support, shared some exciting news about the team’s efforts to find a cure for myotonic muscular dystrophy. Paraphrasing a bit he explained: Earlier this year we applied for a large grant of around $5.6 million over 4 years. The scientists who reviewed the project gave it high marks and it had to go through administrative review at NIH (National Institutes of Health). In late September we learned the grant will be funded. The goal of the project is to optimize a drug that can be taken forward into clinical trials, and to do all of the safety testing that is needed to obtain an “IND” – permission by the FDA to give a new drug to people. The money goes mostly to Isis Pharmaceuticals to cover the costs of purchasing raw materials and, most expensively, to subcontract with the laboratories that do the animal safety testing, which is very extensive. The optimization parts are done jointly at Isis and University of Rochester. Having this co-investment from the NIH, (about 40-50% of their development costs over the next 4 years) helps to make sure that the work will go forward.

Shortly after learning the news, Dr. Thornton was the first researcher to speak at a joint NIH/FDA conference called “Antisense Oligonucleotides in Neuromuscular Disease.” It was the first meeting of its kind. He was glad to acknowledge that their work was supported by NIH and went on to acknowledge “that a small group called Run America Foundation helped get the whole thing launched.”

We’re very hopeful this work will lead to a breakthrough medication that can slow down, stop or even reverse the debilitating effects of myotonic muscular dystrophy. Thanks to everyone who contributes financial and moral support to our cause. Happy Holidays!

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Fundraising Update

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Posted 11 Nov 2010 — by liz
Category Cause

With the days getting shorter and the mercury falling along with the leaves, it seems like a lifetime ago that we completed our trip around Lake Michigan!

On the deck in Michiana

The gang on the final morning of Run America IV

Here in the Thanksgiving season it seems particularly appropriate to thank all the Run America donors who together have contributed just shy of $15,000 (literally we just need another $46 as of this writing!), all of which goes toward continued research to find a cure for myotonic muscular dystrophy.   This $15,000 brings our total over the past eight years and four events to $350,000 – an incredible sum that is generating real results.  We’ll be posting some exciting news on how that money is being put to use soon.

Thanks again for your time, energy and generosity!


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Day 9 Recap – Lake Michigan Officially Circumnavigated!

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Posted 15 Aug 2010 — by liz
Category RAIV, Team

Circumnaivation Complete!

The team knocked out the last 80 or so miles today (again in scorching heat!) after another incredible meal at the Midgley’s.  Kevin and some of the Van 2 team woke up about 5am to get out and do their miles so that Kevin could drive all the way back to DC in time to be in the office on Monday.  Kathleen’s sister, who had come up from Baltimore with her husband and their baby, also chipped in a few key miles which was much appreciated by the team. With Barry leading the bikers, he, Jim, Dave, Dave’s father-in-law (who joined us from the Milwaukee area), Jane and Liz jumped from the runner path and cruised into Chicago along a very nice greenway gazing at the Chicago skyline and watching overhead as the annual air and water show regaled us with stunts.

Dave earned the “man in the saddle”  award for clocking 860+ miles on the bike during our nine days.  On the runner side, Craig pounded out 108 and I am sure there were a few others who were up in that nutty stratosphere as well.

In the end, we finished at Ohio and Lakeshore and toasted the completion of Run America IV at a local Chicago establishment.  It was a grand day!

P.S. Click on the P.S. Click on the Facebook icon (the big blue F) on the top of the page to see all the pictures.  We’ll do our best to get everyone’s photos up on our Flikr account soon!

Day 8 Recap — In the Home Stretch

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Posted 14 Aug 2010 — by liz
Category Events, RAIV, Team

Van 2 at the beach

Today we said good-bye to Tony and Mark before we made our way from Grand Haven to Michiana. It’s in the 90s . . . hot, hot, hot. We ran and biked along the Blue Sky Hwy and the Red Arrow Hwy and ended  up at Kevin’s in-laws’ home along the Lake. David and Janet Midgley and Kevin’s wife, Sarah, hosted the group for a sleep-over and A-M-A-Z-I-N-G food. We were also treated to meeting Kevin’s adorable daughters as well as Kathleen’s sister, husband and baby son who flew in from Baltimore to cheer her on in the homestretch. Chicago is just around the corner!

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Day 7 Recap — Hot and Humid!!!

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Posted 14 Aug 2010 — by liz
Category RAIV, Team

Andrew quenches thirst

Michigan is experiencing a heat wave as we make our way back to Chicago. We’re drinking lots and lots of water. (Still no coffee stops for Van 1. . .)  Speaking of water, today we  encountered bodies of water we didn’t realize were going to be in our path, so, what do you think we did? Yep, swam! Craig, Josh and Ken each took a turn at swimming a fingerling . . . instead of adding miles to go around.

Not much more exciting today, except we welcomed  Carol and Jim Ossyra to the biking group, and Jim B. returned for another day along the Hart-Montegue Trail.  The Old Boys’ Brewhouse was the scene of our group dinner before we headed to the deluxe Grand Haven High School for the night. Impressive!

Two days to go. . .

Day 6 Recap — Moving on Down the Lake’s East Coast

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Posted 14 Aug 2010 — by liz
Category RAIV, Team

Bikers work the phone

Talk about Midwest hospitality! Mary’s Garden opened early for our group so that we could get started on our next leg well fortified! Moving on down the road, we made our way through Traverse City and on to Manistee. Routes 31 and 22 were our friends! Another 100+-mile day, we needed the runners pushing themselves to their limit–with Craig and Ken being the big mileage contributors of the day at 17 miles each. Highlights of the day included experiencing Sleeping Bear Dunes and the blue, blue waters of Crystal Lake. We welcomed Mark Chandler to the Run America mix and said good-bye to Jim Lofton, exchanging one bicyclist for another.

At Day 6, we’re over the hump of our journey. Craig is still running a tight ship, having Van 1 survive on Clif  bars and NO COFFEE; Kevin in Van 2 is still building his energy with Pop Tarts.

Day 5 Recap: Running, Biking…and Swimming–Oh, My!

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Posted 13 Aug 2010 — by liz
Category Events, RAIV, Team

Swimmers conquer Mackinaw Straits

As Craig puts it, “Another day on the road, grinding out the miles.” But today was more than just putting foot or tire to the pavement as The Run America team made its way around the northern tip of the Lake…. Today marked the historic Run America 5-mile swim across the Mackinaw Strait! Led by Michigan native Andy “Ironman” Hanson, the swim lasted a few hours and took the additional muscle power of Tony, Jamie and Justin. What an amazing team effort! We couldn’t have made the crossing without the generosity and encouragement of Captain Denny, skipper of our safety boat. This is one event to brag about for generations!

While the Run America Mackinaw Strait Assault Team was making its way through the swells, the rest of the crew continued to crank out miles, miles, and more miles! Some of the guys are routinely running 10+ miles per day. And, how ’bout that Dave biking ALL day from start to finish, racking up centuries daily! Some of the local sights included the Tunnel of Trees and beautiful sunflower fields. along the way, nice people like Nancy at Legs Inn made donations to the cause–great Midwestern hospitality all the way!

The day ended in Engadine, where we were treated to a great fish dinner and amazing hand-thrown pizza at Pizza Pronto. Today will be a hard day to top.

Day 4 Recap — Getting Stronger Every Day

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Posted 11 Aug 2010 — by liz
Category Events, RAIV, Team

Cat nap!

Who ever heard of motion sensors for lights in a school gym?! So, who was moving around all night so that the lights never went out?!

A little more tired that usual, we packed our bags and moved on out of Gladstone H.S. for Day 4 on the road. Seems that everyone is getting into a groove and running longer and stronger, pumping harder and biking further. The only runner taking a break today was Kathleen, who’s under the weather. (Mom, don’t worry! We’re taking good care of her and she’ll get back on the road soon!) Also, the bikers wondered what Justin’s intentions were when they found his running shoes along the side of the road in the PM. Had he had enough? Was he looking for an excuse to take a break? Whatever, Craig had Justin and the rest of his Van 1 crew cranking out additional miles at the end of the day!

As a reward for all the hard work (Andy says it’s much-needed physical therapy), the runners and bikers ended up playing in the lake near Naubinway, MI, at the end of the day. We were also treated to great meals in two restaurants near Engadine High School where we spent the night. The lights were out by 10 pm!

Day 3 Recap – There really is a Lake Michigan!

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Posted 11 Aug 2010 — by liz
Category Events, RAIV

Look - the Lake!

After resting at West H.S. in Green Bay for the night, we were back on the road again; Craig runs a tight ship and has the vans pulling out around 7am each morning. Even Barry got back on the road, after the help of Jeff at J.B.’s Green Bay bike shop solving the mystery of the blowing tires (faulty taping of the tire rims).

On the road, the runners pumped hard through a scorcher . . .  90s and high humidity. Thank goodness, the route took us near the water, finally! Van 1 and the bikers met up for a dip near the Menominee, MI, marina—where Ken showed off his flipping prowess. Van 2 was thrilled to take a much-deserved break at a state park. (Speaking of Van 2, who is that new, smooth-faced young guy taking Josh’s spot in the line-up? Really . . . did he shave because of the heat—or to maximize his aerodynamic speed to compete with those old guys in Van 1?)

Other highlights of Day 3 include the arrival of long-time Run America participant Tony Green and Jim, our newest biker. And, speaking of bikers, Dave racked up 116 miles (!) today, while Jim B. rolled in with 75, not bad for a grandfather!

We’re spending the night at Gladstone H.S. near Escanaba . . . deluxe accommodations. All are well, we’re on schedule, and we’re staying strong—for the cause!

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