Brian's Story

– YouTube viewers usually visit the site to watch the latest Lady Gaga video or to see the recently documented gaffes courtesy of celebrities and other public figures. However, Brian Schnurstein has utilized this forum to educate people about ALS (amyotrophic lateral sclerosis), the progressive neurodegenerative muscular disease he was diagnosed with in March 2010.
“Imagine (a film about ALS),” the title of Schnurstein’s 13-plus minute video, chronicles the important moments of his life and also informs its viewers how he plans to confront ALS, otherwise known as Lou Gehrig’s Disease. For his role in raising public awareness about this disease, The ALS Association’s Michigan Chapter recognizes Schnurstein along with his wife and primary caregiver Lindsay and their daughter, Kylie, a toddler, for exemplifying the spirit of “ALS Across America” during May, which is ALS Awareness Month.
The “ALS Across America” national campaign honors people fighting ALS and their caregivers as role models. These individuals inspire The Association and the ALS community as they make a positive difference by spreading awareness about ALS and by living their lives to the fullest. People with ALS typically have a survival rate of two to five years from the time of their diagnoses.
“Imagine (a film about ALS)” showcases photographs from Schnurstein’s wedding and his daughter’s birth and uses well-known songs, including John Lennon’s piano ballad “Imagine,” to convey the mood of the images shown on screen. The video asks its observers to “Imagine living a good life” or “Imagine taking a battery of tests” to uncover an illness. This poignant yet compelling piece also features footage from baseball legend Lou Gehrig, and it illustrates how Schnurstein believes a cure for the ALS does exist. Since its release in February 2011, more than 1,100 people have viewed the video.

“The video is emotional, but more importantly, it is educational. Its viewers see and learn about ALS and how the disease attacks the nerves and eventually paralyzes the entire body,” says the chapter’s executive director Stacey Orsted. “Viewers also get a better understanding of how physically limiting ALS is. The video has an inspirational ending, indicative of how Brian has inspired this chapter and us all.” To watch “Imagine (a film about ALS),” click http://www.youtube.com/watch?v=vwOcDTlf058.

Aside from creating this video, Schnurstein, 30, has worked closely with the chapter in raising awareness about Lou Gehrig’s Disease through several fundraising ventures involving his family, friends and co-workers. More than 100 people participated in the chapter’s annual Walk to Defeat ALS® in his hometown of Portage in September of 2010. These individuals who were members of Schnurstein’s Walk team, dubbed “Brian’s Bullpen,” raised more than $10,000 that went toward research and patient services programs for the chapter.

Other events that raised funds and awareness for ALS have included a golf outing which occurred in the summer of 2010 that involved dinner, entertainment, a raffle, and a silent auction and a fundraiser at a local restaurant that Schnurstein’s associates from his workplace Stryker organized for him in the fall of that year. Both events respectively raised $75,000 and upwards of $12,000.

As part of ALS Awareness Month, The ALS Association hosts the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. May 8-10. The conference is the single largest gathering of the ALS community and empowers people with ALS and their families with the ability to play an active role in advocating for a treatment and cure. This outreach to Members of Congress has helped to achieve many significant victories for people with ALS from waiving the 24-month Medicare waiting period for people with ALS to improving benefits for military veterans with the disease, who are twice as likely to develop ALS as the general public. The conference also helped lead to the establishment of a Nationwide ALS Registry and has more than quadrupled annual government funding for ALS research. The Association encourages people with ALS to enroll in the National Registry; visit http://www.alsa.org/als-care/als-registry to find out how.

According to Orsted, Schnurstein, Lindsay and Kylie along with Schnurstein’s parents Ray and Wendy and his older brother Steve will attend this event to advocate for people with ALS in the nation’s capital with other members of the ALS community. As constituents of the State of Michigan, they are eager to personally share Schnurstein’s story with Rep. Fred Upton (R-MI 6th District), who is Chairman of the House Energy and Commerce Committee, which has jurisdiction over health care issues that impact people with ALS.

The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.