What would you do if you were suddenly faced with a disease that would rob you of your mobility, your speech, your independence, and ultimately your life, all within the space of just a few years? I have asked myself this question countless times since I joined the ALS Association Connecticut Chapter just a few months ago. Although don’t know much about who’s who in professional sports, it seems I can’t remember ever not knowing the story of baseball great Lou Gehrig, who succumbed 61 years ago this past Saturday to Amyotrophic Lateral Sclerosis (ALS). Gehrig stepped off the baseball field and into American legend when he made his “luckiest man on the face of the earth” speech at Yankee Stadium in 1939. Already celebrated for his unparalleled accomplishments as an athlete, and admired for his kindness, humility and determination, Gehrig came to personify the word “hero” after battling ALS with a level of grace and courage that has inspired generations of Americans.
The grace and courage shown by Connecticut’s local heroes in the face of ALS, now commonly known as Lou Gehrig’s Disease, is no less humbling. Brian Savo—just one of the many remarkable individuals whose examples inspire us on a daily basis at the ALS Association Connecticut Chapter—now 36, was diagnosed with ALS in 2009. Savo, a lifelong athlete, the successful owner of a local flooring business, and a young husband and father, was stunned by the news, but turned his considerable energy and passion to what he cares about most. This has meant spending time with his friends and family, coaching the North Haven JV Hockey Team, and generating awareness in the community about ALS—from raising money to support the services of the ALS Association Connecticut Chapter to traveling to Washington DC to advocate with our lawmakers for those living with ALS. “For me it’s about turning something bad into something good…you need to focus on what’s important in life; and that’s living it to the fullest. Find your purpose in life and try to fulfill your goals,” he says.
Our local heroes—the hundreds of men and women living with ALS—are distinguished by their passion for spreading awareness about this terrible disease in the hope that, one day, a cure will be found for those who come after them. While nearly a century has passed since Lou Gehrig lost his fight with ALS, we still know far too little about what causes ALS. Despite promising research in recent years, we are still a long way from finding effective treatments or a cure. Affecting as many as 30,000 Americans at one time, ALS is a fatal neuromuscular disease that progresses rapidly, robbing a person of the ability to walk, eat, speak or breathe, and eventually leading to paralysis. All affected will ultimately need intensive, round the clock care, costing as much as $250,000 a year. Many needs are not covered by traditional medical insurance or entitlements, and when family members reduce their work hours or leave work completely to care for a loved one, the financial and emotional burden to the family is often overwhelming. And throughout the progression of the disease, the person affected remains completely aware, the ability to see, smell, taste, hear, or recognize touch intact.
The ALS Association Connecticut Chapter offers hope and help to people living with ALS by delivering concrete services and programs, free of charge, to patients and families throughout the state. Our impact extends beyond the borders of this state through our support of national advocacy efforts and cutting-edge global research into effective treatments and, someday, a cure. We rely completely upon the generosity of donors—individuals, businesses, corporations and foundations.
On Wednesday, June 13th, members of the community can honor the everyday heroes of the ALS Association Connecticut Chapter by attending “Step Up to the Plate”, a happy hour fundraiser at Crush Sports Café, located at 1015 Bridgeport Avenue in downtown Milford. The event will feature a silent auction with sports memorabilia, spa packages, Red Sox tickets, a photography session, and more. Attendees can purchase a balloon and get a chance to win a prize donated by a local business. Tickets are $25 in advance; $30 at the door, and entitle the purchaser to appetizers and two drinks. All proceeds from the event will benefit the ALS Association Connecticut Chapter and the services we provide to local patients and families. Call 203-874-5050 or visit www.alsact.org to purchase your ticket. Be a hero—join us at Step Up to the Plate and help our local heroes to create a lasting legacy—a world without ALS.