Feb 2005: Frank and Sue Engels learn that, for the second time in their lives, a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS).
Jan 2006: Frank, at age 52, begins training for his first marathon to raise awareness of ALS.
Sep 2007: We join ALSA Advocacy Center to help pass the ALS Registry Act.
Oct 2008: The President signs the ALS Registry Act.
Aug 2010: DefeatingALS organizes the first annual Lou Gehrig Day at Wahconah Park with the Pittsfield Colonials Ball Club.
Sep 2010: Frank Engels, Sue Engels and Terri Handler bring the first Walk to Defeat ALS to the Berkshires in Western Massachusetts. 220 walkers raise over $35,000 in donations.
Apr 2013: Facebook.com/DefeatingALS posts fundraising and awareness raising events to over 350 people who want to do something to defeat this disease.
In 1988, Sue's mom, Marie Alger (Geniesse) died of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. At the time, not much was known about the cause nor were there treatments to manage or slow the disease. Things were about the same then as in 1941 when Lou Gehrig died.
In 2007, Frank's brother, Steve Engels, died of Lou Gehrig's disease. After almost 20 years, little is known about possible causes of ALS. Scant progress has been made in slowing the progression of the disease. In 2007, 50 years after Lou Gehrig died, a national medical research database is not even available.
Our mission is to help others quickly find support and information about dealing with ALS, to engage them in expanding awareness of Lou Gehrig disease and help raise funds to defeat it.
Our efforts began in 2006 with an awareness and fund-raising event at the Green Bay Marathon. where Frank ran his first marathon and led our team. We came from all over the U.S. and Europe, in person and in spirit, lapped historic Lambeau field, home of the world famous Green Bay Packers to raise awareness and funds for ALS education and research.
Since 2006, dozens of people have contacted DefeatingALS, requesting information on how they can help raise awareness and funds to honor or remember a family member or friend with ALS. From the beginning, we have personally answered every inquiry and posted, for free, their events, whether in Texas, California, New York or North Carolina.
With our new Facebook page, facebook.com/DefeatingALS, we expanded our presence to help others find awareness and fund-raising resources in their local area and advertise those events for free.
In 2010, we joined forces with ALSA-MA and brought the first Berkshire Walk to Defeat ALS placing the walk route through the revitalized, vibrant downtown Pittsfield.
Leading up to the walk, we organized the first Lou Gehrig Day at historic Wahconah Park with the Pittsfield Colonials ball club, which will be a yearly event.
In the future, we will continue to sponsor events and advocate funding for the ALS Registry, which will help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. We will also reach out to Veterans organizations in our area, advocating support of medical researchers searching for the reasons for the increased risk of ALS among the U.S. military personnel.
We invite you to contact us about our mission to do something positive on behalf of ALS research. Start a fundraising event for ALS, post an event on our Facebook page, join our email list or just leave us a note.
We would be pleased to have you join us in our efforts to defeat ALS .
Frank & Sue Engels
10 Sep 2010
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