June 2011

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
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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
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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