More Great News About Our Research Team

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Posted 30 Mar 2013 — by liz
Category Cause

On February 7, 2013 our leading researcher in the fight against myotonic muscular dystrophy, Charles Thornton, was installed as the inaugural Saunders Family Distinguished Professor in Neuromuscular Research at the University of Rochester.  You can read the full article here (about half way down the page).

As described by Mark Taubman, University of Rochester dean of the School of Medicine and Dentistry,  “Charles epitomizes the translational scientist. His current work is taking advantage of exciting new developments in RNA biology to provide novel approaches to crippling diseases. And as an active clinician, he is ideally suited to be able to take results from the lab to the patient, which is exactly the work being done in the Saunders Research Building.” As highlighted in previous posts on this blog, we’ve seen this to be true firsthand and are thrilled to see Charles receive this recognition.

 

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Big News in Drug Development

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Posted 27 Jul 2012 — by liz
Category Cause

WESTON, Mass. & CARLSBAD, Calif.–(BUSINESS WIRE)–Jun. 29, 2012– Biogen Idec (NASDAQ: BIIB) and Isis Pharmaceuticals, Inc. (NASDAQ: ISIS) today announced that they have entered into an exclusive, worldwide option and collaboration agreement under which the companies will develop and commercialize a novel antisense drug for the treatment of myotonic dystrophy type 1 (DM1), which is also known as Steinert disease.  (from press release)

Read full article here, including details about funding amounts that could reach $200M!

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10 Years Ago Today the First Run America Crew Headed East

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Posted 25 May 2012 — by liz
Category Events, RAI

As our fearless leader, Craig, just reminded us, it was 10 years ago today, May 25, 2002, when Kevin Cassidy dipped his toes in the Pacific (on the Oregon coast) and we started running east.  Remarkably, thirty days later we made it to Boston, on schedule and in relatively good health.  And what a good time we had along the way.

Thanks to all of you who have participated and supported us.  It has certainly been one of the highlights of many of our lives!

In a fond memory of the trip, Bill Hodges, submitted this entry: We were running between Alliance Nebraska and Thedford Nebraska, on Day 14.  I think it was 7 June.  On the wall of the café in Hyannis was this:

“God said ‘I’ll build America from the east to the far north west
I’ll use everything I have, it’ll be the very best.’
He build many beautiful things from New York to Alaska;
He took a piece from every place and then he built Nebraska.
Majestic rows of corn and miles of rippling wheat,
Trees and streams, birds and flowers, green masses of sugar beet.
He erected Chimney Rock and the hills of the Wildcat,
He molded the great Pine Ridge and dredged the valley of the Platte,
He carved out the Niobara and the trail of the winding Snake,
He stocked an abundance of wildlife and fish in every lake.
He added wind and rain and snow and a dash of wintry chills,
Then he build his masterpiece, the lovely Nebraska sandhills.
Soft rolling ridges and great green valleys, land of the cattle call.
There he built Hyannis and the Old Timers’ rodeo, grandaddy of them all. “

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.

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