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ALS Patients, Families and Organizations Unite in Boston 4♦ALS Awareness

May 5th, 2011, marked the 3rd consecutive year that the Boston Red Sox have participated in the league-wide 4♦ALS Awareness Campaign. This year’s events continued its focus on involving people living with ALS in all aspects of the pre-game ceremony. ALS TDI was pleased to be joined by representatives from the MDA and the ALSA Mass Chapter and other advocates and folks touched by ALS (pictured above).

In addition, the Boston Red Sox recognized ALS TDI scientist Ken Thompson (pictured here with his family). Thompson was childhood friends with ALS TDI inspiration, ALS patient Stephen Heywood, and has been part of the research and development team at ALS TDI for more than 10 years. He is primarily responsible for determining how to delivery drugs into an ALS model to check for their potential as treatments for Lou Gehrig’s disease.

Many patients and families participated in the pre-game ceremony, including throwing out the ceremonial first pitch, saying “play-ball” and singing the national anthem. However, one patient, Frank Provost of Hinesburg, VT, missed the pre-game ceremony because of the unexpected heavy traffic clogging the area around Fenway Park. “There aren’t many options to speed things up when you have ALS. You have to move at the pace of the disease. That means parking a van, unloading a wheelchair, getting into the chair, getting to the gate, navigating through crowds, finding an elevator, etc, etc. Frank did it all with the biggest smile a person could have,” recalls Alicia Grossi, the Northeast Regional Director of ALS TDI, who waited outside the park for the Provost family.

Despite it all, the Provosts were determined to make it to the game, as this was Frank and his wife Karen’s first trip together with their four children (pictured) to Fenway Park. Commenting after their long trip back home, Frank says, “The game went past 2:30am because of the rain delay and the entire family enjoyed every extra minute we got at Fenway Park. We are so grateful to the Boston Red Sox and Major League Baseball for making this family first possible.”

Click here to learn more about the Provost Family
Click here to learn more about Ken Thompson
Click here to donate to ALS research

Tracking the 4ALS Awareness Campaign from Coast to Coast in 2011 via this Blog and Facebook

More than 70 years ago, Lou Gehrig took to the field in New York to say goodbye to baseball. He was forced out of the game by ALS – a progressive neurodegernative disorder for which there is no known cure. Today, this is still the case, and there are more than half a million people battling this same disease. But there is reason to hope; thanks to a greater understanding of this disease, greater awareness and an increased effort to develop effective treatments for patients today. This year is the third year of the league-wide 4ALS Awareness campaign, created in partnership with MLB and several leading ALS organizations, to continue the fight against the disease that felled the “Iron Horse” all those decades ago.

Since 2009, the entire league has come together to help increase the world’s understanding of ALS and to highlight the work being done in labs across the globe to develop effective treatments for patients today. The ALS Therapy Development Institute is pleased and honored to be part of this campaign and to be leading that fight. During the month of May, we will be kicking off the campaign at the 4ALS Day event at Fenway Park on May 4th; followed by events in nearly every other park throughout the rest of the season. These events will include ceremonies recognizing people currently living with ALS and their families; helping to put a modern face on this disease.

We are also doing something unique during the month of May. Each day this month, we will be posting a picture taken in our research institution. These pictures will be of real researchers doing real experiments on real drugs designed to combat ALS. These pictures will be posted daily on Facebook and Twitter. Click to follow and leave comments for the team working everyday at ALS TDI on behalf of patients today. We will also be posting recaps, pictures and video from each of the 4ALS Days here on the blog at MLB.com/4ALS.

While there is no known cure for ALS today, we are closer than ever before. This is in part thanks to the work we have been able to do because of the support we receive from MLB, all of the clubs in the league, and, of course, fans of baseball everywhere which share our vision of a world without ALS.

Click here to view an update on ALS research
Click here to learn more about ALS clinical trials
Click here to donate to the fight to end ALS

Robert Goldstein (rgoldstein@als.net) ALS Therapy Development Institute