Minor League Baseball Gives National Exposure to ALS
Tens of thousands of baseball fans across America are now more aware of Lou Gehrig's disease and its impacts on patients, families and caregivers as a result of ALSA's involvement in Minor League Baseball's Charity Partners program.
In addition to increasing the public's awareness of the disease, fans made generous donations to patient services and research at stadium events sponsored by ALSA and teams during the first year of the program.
"One of the most important aspects of the events is that they bring the ALS community together. It's a place where families can come for a night of fun and fellowship," said ALSA Central Tennessee Chapter Executive Director Beth West.
Patients at West's chapter are reaping the benefits of game event proceeds. "Funds from our events help the Chapter provide a Respite Care program, a full-time staff person whose sole responsibility is to directly assist patients, education materials, funding for national research projects and many other programs to help improve the quality of life for ALS patients."
West is already excited about next season. The Chapter expects to stage events with the Nashville Sounds, Memphis Redbirds and Kingsport Mets.
The Charity Partners program opened new doors for the Greater Philadelphia Chapter with the Trenton Thunder. Established ties with two teams affiliated with the major league Philadelphia Phillies continues strong.
"Mike Cummings of the Scranton Red Barons and Jim DeAngelis of the Lakewood Blue Claws are great partners," said Chapter Special Events Manager Allison Walker. "They and their staff members put out quite an effort for the events they work on with us."
The Red Barons hosted the chapter's largest Minor League Baseball fundraiser, which raised $35,000 and is based on the Phillies Phestival.
Bigger than the Sky
They have been called "a love story"- the man with a twinkle in his eyes and a world-wide grin that warms your heart the first time you meet him and the might of a woman who will let nothing stand in the way of his fight for life. Steve Nichols will tell you that it is his wife Helene and her love that give him the will to succeed. She will tell you that it is his love for his grandchildren and the special bond that he shares with their oldest grandchild, Miss Emilie. Whatever it is, it works, and it has for ten years as the two of them continue to beat the odds and live happily ever after as Steve battles with ALS.
Says Helene, "I pride myself in the fact that we do not employ a professional staff to help us with Steve's care. I juggle the everyday exigencies placed on me as Steve's caregiver with the demands of my career as a federal government employee. But the reality is that we do not do it alone. No bows here, even though the spotlight is trained on us, without a first round of applause to the group of friends who have stepped up to bat for us." They call them "Steve's Team" and if a roll call were to be taken, that team is composed mostly of people they have met as a result of the ALS diagnosis. The ALS Association's DC/MD/VA Chapter has been instrumental in helping them along the way, no matter what their needs. They have a community of support which starts with Steve's doctor who not only cares for Steve but prays for him as well. They have friends who have become family.
The Nichols' philosophy is that both the quality and quantity of life are vastly determined by attitude. Helene -"hope allows us a dream and faith affords us a future." Steve had his own computer consulting business prior to his diagnosis with the disease. He has the determination and devotion to beat ALS, not just long-term but every day. Steve awakens each day with a smile and is determined to succeed and to be happy no matter what curve balls life throws him. Steve's personal philosophy has always been that he plays to win. And, to everyone that knows the couple, it is clear that in Helene's eyes, Steve is her hero, and that he has already won.
Amazing as it may sound, there have been very few days when problems have overwhelmed Steve and Helene. Calling ALS the enemy in hiding that stalks in silence, Helene acknowledges that strangely enough, it has also smiled on their lives. Over the past decade the couple has spent some of the happiest days of their lives and experienced many "glad moments".
One of those moments came on March 4, 1997 when the couple's first grandchild, Miss Emilie, was placed in her grandfather's arms. Despite his inability to walk or to talk, Steve and Emilie have found their own ways to interact, communicate, and have fun together. Having inherited her grandfather's undaunted spirit as well as his drive, Emilie declared at the age of six - "I want to help people with ALS, and plain people too."
Their story is told in the book Helene has written, Bigger Than the Sky.
The Fenton Art Glass Company Partners with ALSA in the Quest for a Cure
 The Fenton Foundation of the Fenton Art Glass Company has selected The ALS Association (ALSA) as its 2004 National Partner in an effort to raise awareness of ALSA and its mission to find a cure for and improve living with ALS.
Through the sale of a special, limited edition glass basket called Wish upon a star, the Fenton Art Glass Company has already raised more than $9,200 for ALSA. The exclusive piece was designed specifically for ALSA by award-winning Fenton artist Robin Spindler. This unique basket will be produced through 2004 and is available through Fenton's website at www.fentonartglass.com.
Following up on the success of "Wish upon a star," Fenton Art Glass is now working on a special heart trinket box to be available for sale next spring with proceeds also going to The ALS Association.
Advocates Honored at 2004 National Advocacy Day
The ALS Association's 2004 National Advocacy Day and Public Policy Conference was a great success thanks to the many advocates and volunteers who made their way to the nation's capital to share with lawmakers their unique stories. It was also a time for us to recognize the accomplishments and tireless dedication of our advocates. Below are two outstanding advocates who were honored during the 2004 Advocacy Day for their extraordinary efforts which point to a brighter future for us all.
David Cone- Major League Advocate
To say that David Cone's career is loaded with "highlights" would be an understatement. David played Major League baseball for sixteen seasons with the Kansas City Royals, New York Mets, Toronto Blue Jays, New York Yankee and Boston Red Sox. The recipient of The ALS Association's 2003 All-Star Award, David has been an active and significant participant in the Greater New York Chapter's efforts to build awareness and raise money in the fight to strike out ALS where he is an honorary board member. He has been an unofficial spokesman for the chapter since 1996 and is now the New York Yankee's official liaison to the ALS community. He was chair of the "Strike Out ALS" campaign from 1996 to 1999. He filmed a public service announcement for the chapter for ALS awareness efforts in 1998 and he has been a consistent financial support to the chapter through his charitable foundation.
Jonna Hunter-An Advocate with Results
The recipient of this year's Rasmussen Advocate of the Year award went to a special woman, who along with her late husband, refused to take no for an answer when the government told them that he was not yet eligible for Social Security disability benefits. When the Social Security Administration denied him disability coverage, they fought the system -- first for themselves, then for others with ALS.
As many who have struggled through the process know, the Social Security Administration simply did not recognize the speed at which ALS progresses. All that changed when John and Jonna Hunter and their struggle with the Social Security Administration became the subject of an investigative report by local newsman Duane Pohlman. The Social Security Administration reversed their decision and approved John to receive his benefits three days after the report aired. But the Hunters weren't satisfied as they knew that nothing had changed for the thousands of other ALS patients in the country.
Over the next nine months, the Hunters fought to change Social Security's rules. Because of the persistence of John and Jonna Hunter, ALS patients no longer wait as long to receive disability benefits. Even though John has since passed on, his legacy is very much alive in the relief that ALS patients receive when their financial burden is lightened.
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