Arizona Diamondbacks Host 3rd Annual 4♦ALS Awareness Day, Scoring 4 Runs and a Big Win for ALS Awareness

The Arizona Diamondbacks hosted their third annual 4♦ALS Awareness Day at Chase Field on Friday, June 3, 2011, by inviting patients with ALS (PALS), their families and friends to join together for a night of awareness building and starlit baseball.

Shawn Bridges, Scottsdale, AZ, resident and ALS TDI ambassador, represented ALS TDI on the field in honor of her brother, Stuart Bridges, who lost his battle to ALS last Fall. Shawn, looking resplendent in ALS TDI purple, was joined by Dr. Shafeeq Ladha, director of the MDA/ALS Clinic at Barrow’s, neurologist Suraj Muley, and PALS Steve Posso and Victoria Armstrong. Posso read the Lou Gehrig speech as all four organizations (ALS Therapy Development Institute, Augie’s Quest, MDA/ALS Division, and ALSA) were represented on the jumbotron.

The Arizona Diamondbacks escorted the entire ALS contingency up to the “party suite”, and the stadium roof was opened to a stellar night for baseball. Also attending the special 4♦ALS Awareness Day was Katrina DeVinny and her family.

“It was a perfect evening to relax and watch a baseball game. It was also so nice to see all the people that came out to support ALS efforts. Hey Mom, we are still fighting and we still miss you!,” said DeVinny, whose pictured here with her husband, Ryan, and their son, Carter. DeVinny lost her mother, Sue Cox, to ALS in 2009. In addition to participating in this important awareness event, she is co-chair of “The 2130”, a charity bike ride recognizing the number of consecutive games played by Lou Gehrig. ALS is commonly known as Lou Gehrig’s disease.

All in attendance were very appreciative of the wonderful gesture by the Diamondbacks to bring attention to the cause of ALS awareness and research. The Diamondbacks won in a shutout, 4-0 over the Washington Nationals.

Click here to learn more about the DeVinny/Cox Family
Click here to learn more about the Bridges Family
Click here to donation to ALS research

Minnesota Twins Organization Heroes to Local PALS

“He only practiced it once on the way in to the ballpark today,” proudly stated Joe and Erik Brandt, when asked if their father, Michael, had rehearsed Lou Gehrig’s famous “luckiest man on the face of the earth” speech before reading it during the pre-game ceremony at Target Field in Minneapolis this June 10, 2011. Brandt was diagnosed with ALS (Lou Gehrig’s disease) this past April.

Brandt flawlessly and purposefully read the famous first baseman’s speech from a microphone set-up near first base. In true Midwestern fashion, the crowd responded with more than simple applause but came to their feet to recognize 4♦ALS Awareness Day, an annual league-wide campaign organized in partnership with Major League Baseball. Afterward, Brandt made his way to Section 240, where a proud contingent of three generations of family members awaited him.

Alex Grausnick, who was diagnosed with ALS four years ago at age 17, also attended the game along with his father Scott, step-mother Dee Dee and Uncle Kurt. “It’s not easy living with ALS, but I’ve been fortunate so far that it’s been slow to progress. But I’m the exception, and seeing other people with ALS here tonight in wheelchairs, that’s very difficult for me to look at. But we’re all in this together, and although awareness is good, what we really need is more funding going to research so that maybe I don’t have to ever get into a wheelchair myself,” said the young man who is set to graduate from the University of St. Thomas next May with a degree in Finance and Spanish.

The weather didn’t hold up for the game, with serious downpours causing many in the two-season old open-air stadium to seek cover, but there was no stoppage of play. Instead this created an intimate atmosphere in a town where people seem to thrive on conversation with strangers while enjoying smoked turkey legs and local brews. The Twins fell behind their division rival, the Texas Rangers, early on in the second inning and never were quite able to catch back up. Thanks to the generosity of the Twins and MLB, nearly 100 people living with ALS (PALS), such as Scott Stafne and Michael Winston, along with their family members and friends were provided tickets to be part of the 4♦ALS Day.

The Rangers host their own 4♦ALS Day at Rangers Stadium in Arlington, Texas on July 28, 2011, against none other than the Minnesota Twins. Official 4♦ALS Awareness campaign partner, The ALS Therapy Development Institute, has organized 100 members of their local ALS community in Texas to represent for the cause at that game as well.

Click here to learn more about the Grausnick Family
Click to listen to recent Podcasts on the latest ALS research
Click here to donate to ALS research

Anaheim Fire Fighters Team with Angel Wives to Help Local Kids with Muscle Disease

The Anaheim Firefighter’s Association Local 2899 partnered with the Angels Wives for the inaugural Angel Stadium “Fill-the-Boot” to benefit the Muscular Dystrophy Association (MDA), raising over $11,500 this past weekend. The Fill-the-Boot took place outside Angel Stadium before and during the Sunday, June 5th game when the Angels hosted the New York Yankees. All proceeds from the event will benefit Orange County families served by the Muscular Dystrophy Association.

The Angels Wives and Anaheim Firefighters asked Angel and Yankee fans to “fill their boots” with cash and coin to help fund the MDA children’s clinic at CHOC, as well as the ALS Center at UC Irvine, in addition to providing wheelchair repair, lifesaving flu shots and MDA summer camp for differently-abeled kids. Most importantly, donations collected during this year’s “Fill-The-Boot” campaign will fund research to help find a cure for 43 neuromuscular diseases. MDA Local Goodwill Ambassadors Josh Ferrell of Anaheim and Holly Winberg of Brea were in attendance to cheer on the Firefighters and Angel wives on as they braved the heat and throngs of fans at all six gates. Anyone wishing to make a donation toward the MDA through the Anaheim Fill the Boot can visit: https://www.joinmda.org/anaheimfilltheboot2011/anaheimfilltheboot.

On July 7th, the Angels will host their “4♦ALS Day” at Angel Stadium as the Angel wives and firefighters will present the funds from the Fill the Boot campaign to MDA during a pregame ceremony. The first pitch will be thrown out by MDA client and former fire chief Phil Kelleher and his daughter Tyler. The Angels have also donated 100 tickets to MDA for July 7th so that the families they serve can attend the game as well.

In 1954 the International Association of Fire Fighters chose MDA as their “charity of choice.” For the last 56 years, Firefighters have made Fill-the-Boot their signature fundraising activity– directly helping families in their local communities who are living with neuromuscular disease. This was the 26th Annual Anaheim Fill the Boot, but the first at Angel Stadium.

MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services and far-reaching professional and public health education. We receive no government or United Way funding, nor do we seek payment from the individuals we serve or their families. Services include physical, occupational and respiratory therapy, genetic counseling and testing, social services consultation and year-round patient care.


To learn more about the MDA/IAFF partnership, visit http://www.iaff.org/mda/.

For more information on the Angel Stadium Fill the Boot please contact MDA Orange County & Inland Empire Chapter at 714.245.0921.

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

INFORMATION FOR ALS PATIENTS AND CAREGIVERS

As Director of Therapeutics Investigation at ALS TDI with extensive
credentials in academics and industry, part of my job is to be aware of what is
happening around the world in working towards understanding this devastating
disease – why it initiates and progresses and what are the prospects for drugs
that will slow and stop the loss.  Researchers in our labs and around the
world are making real progress towards this immediate goal.

 

This progress brings biologists and other researchers like me to
recognize that I and others working in this field have come full circle to
nearly realizing the dreams that motivated us to become researchers in the
first place: the drive to make a difference and to touch lives with new
therapies.  To get an idea of what we at ALS TDI are excited about, check
out what Steve Perrin, who leads our
research institute, has to say on our program’s progress and, in particular, on
a potential therapeutic that we are particularly bullish on (click here to
watch this video
).

 

I have two messages for all the PALS and CALS and family and friends:
first, Hold Fast, the drugs are out there, somewhere on a bench or in an
animal study that are going to make a difference.   Our lab alone has
some 40 unique projects in evaluation and we have a very ambitious program
aimed at understanding the disease and to derive biomarkers that can enable
better and faster clinical evaluation of prospective drugs.  And finally: Get
Involved
– we and other organizations welcome new partners as we change
forever the prospects and prognosis associated with this long neglected, unmet
medical need.  If you are able, consider making a donation in support of ALS
research. 

 

Thank you,

 

John McCarty, Ph.D.

Director Therapeutic Investigations – ALS TDI

LEARN MORE ABOUT RESEARCH AT – http://www.als.net

            

P.S. If you or someone you know has a question about Lou Gehrig’s
disease please post a comment below on this blog or take advantage of the
world’s largest online discussion board by posting your question on the ALS
Forum (click
here)
. With most members ALS Patients and Caregivers, the ALS Forum is a
unique place where you can ask questions and get answers from people that know
what ALS means for patients and family.  Also, you can learn more about
ALS Research during our monthly webinars: times and dates of those online
discussions and presentations are available by clicking
here

LIVING WITH ALS: TOUGH QUESTIONS REAL ANSWERS

Hello, my name is Noah benShea, and I am the National Laureate for
The ALS Association.
I am honored to be involved in this historic effort to bring
greater awareness to Lou Gehrig’s Disease and the need to fund critical
research to bring new therapies and hopefully a cure to those with ALS. Like
any other kid who grew up around baseball, I
never dreamt my life would
be entwined with the life of Lou Gehrig. But then, if ALS teaches us anything,
it is that life is not a dream.

This doesn’t mean we don’t say anything until we are past anger,
denial or the like, but it does mean we are being straight with ourselves about
what we’re feeling facing this monster.

ALS Community and Baseball Fans Unite 4ALS Awareness! Live ALS Reaeach Update to be Webcast on July 16th

Hello there again baseball fans,

During a live webcast this July 16th at 6:30PM, ALS TDI will
provide the latest information on
ALS TDI’s research from the first half of 2009, introduce the new online Drug
Development Pipeline interface and preview planned studies and experimental
approach for the second half of the year. 
Dr. John McCarty will join me
in answering your questions and in providing the latest information
on progress being made at ALS TDI. Dr. McCarty will also have a special report
on impressions from reports and presentations made during the International
Society for Stem Cell Research Conference taking place in Barcelona, Spain
this month. This event is offered free of charge and registration takes only a
moment via this link: http://www.als.net/ResearchUpdateCall

Sincerely,

Steve

Steven Perrin, Ph.D.

Chief Executive Officer & Chief Scientific Officer

ALS Therapy Development Institute

Click Here to Donate to ALS TDI: (www.als.net/mlb4als)

Gene mutations linked to ALS open up new avenues for research.

This is an exciting time for researchers in the ALS field
and I wanted to share with you some encouraging developments in our scientific
progress as we commemorate the 70th anniversary of Lou Gehrig’s
farewell speech.

Focus on ALS on July 4 and Always

Nineteen years ago I was exposed to Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease. I am excited beyond belief that on July 4, 2009, Major League Baseball will finally honor a man who gave so much, all really, of himself to the game and its fans.

I remember the day I met Dick Bergeron like it was yesterday.  I was with the Philadelphia Phillies at the time, and we had a meeting one day with a representative from The ALS Association to coordinate the annual Phillies Festival.  I was in awe of the courage that Dick showed in the face of his disease, and so my wife Shonda and I found something to commit ourselves to:  the ALS cause.

Everything happens for a reason, the Lord does work in mysterious ways. I had always been bothered by the fact that ALS was not even on Major League Baseball’s radar as something to work to fight or raise awareness. Little had been done in the past. But it appears to me now that that is perfectly ok and is the best possible thing that could have happened.

How is that possible you might ask?

Major League Baseball is sitting in front of more people, being seen, heard and watched by more pairs of eyes than at any time in its history. On July 4th of this year more people will receive an introduction to ALS, what it is, what it does and what it means, than on any day in the history of mankind.

For that we have Commissioner Bud Selig to thank. His eagerness to participate in the 70th anniversary of one of the five most famous speeches of all time is something people with ALS will be forever grateful.

MLB has the power to change the world when focused and delivering the right message, and I am proud to see that message being presented to the world this year.

People will learn of a man who truly was one of the few athletes in our lifetimes warranting the label Hero, Courageous and Warrior. He battled this fatal illness for at least a full year while continuing to play baseball. If that doesn’t resonate with you, I beg you to at least understand what ALS does to the human body, and mind. If you do that much you will grasp some semblance of understanding of why this man should and will be celebrated.

But most important, Lou’s legacy will live on in all of you who see it in your hearts to contribute to the research that we need to find a cure for this horrific disease and to make the lives of people with ALS just a little bit better until we find that cure.

God Bless

Curt Schilling

Read more of Curt Schilling’s blog at www.38pitches.com and Donate Now to The ALS Association

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