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 and Sue decide to do something positive on behalf of ALS research. Frank, at age 52, begins training for his first marathon to raise awareness of ALS.
May 2006: Frank completes the Green Bay marathon in 3:50:41. He leads a team of 19 runners & walkers and raises over $7,500 to help defeat ALS.
Sep 2007: DefeatingALS joins ALSA Advocacy Center in efforts to pass the ALS Registry Act.
Sep 2008: Barb Engels leads Steve's Stars "Walk to Defeat ALS" team. The team of 27 family members and friends raises over $3,000.
Oct 2008: The President signs the ALS Registry Act.
ABOUT US
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 of ALS and there were no treatments for slowing the disease or managing the symptoms. 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. Still, after almost 20 years, little is known about possible causes. And scant progress has been made in slowing the progression of the disease. In 2007, a national database wasn't even available to the researchers, over 50 years after Lou Gehrig died!
Our Mission
Sue Alger and Frank Engels met at St. Norberts College near Green Bay WI, fell in love and got married. In May 2006, we returned to the area with a mission.
Frank ran his first marathon. Although an impressive goal and test of his endurance and capacity at age 52, that was not the primary mission.
Frank explains:
"I realize that all of us have probably faced some type of family issue and we all deal with it different. I have come to the realization that when a rare disease like this affects your family twice you had better do something. So, in my infinite wisdom I decided to run 26 miles 385 yards to help raise awareness and funds to defeat this killer."
Why Green Bay?
Green Bay is not only where we met, it's Sue's mom and dad's hometown and her birthplace. St. Norberts is her dad's alma mater. Many Algers and Geniesses still live in the area, cheering on those world famous Green Bay Packers. All her brothers are "cheeseheads". (How she married a Bears fan, no one can figure out, but we think the boys have forgiven her by now..)
As a bonus, the path of the Green Bay marathon traverses the bridge near the college where, over 30 years ago, Frank and Sue walked, talked and fell in love on a cold, snowy Wisconsin winter night. That bridge, in Depere, is about mile 21 of the marathon.
It's a Family Affair
Frank's decision inspired family and friends to participate, at some level, to come together as a group in a spirit of support and hope.
Brothers, sisters, aunts, uncles, cousins, nieces, nephews and friends joined us in Green Bay on May 21st. They were with us in person or in spirit from Ohio, Illinois, New Jersey, Wisconsin, Texas, Indiana, Connecticut, Florida and Lyon, France to walk, run, relay, sponsor, host, cheer on and celebrate together at the finish line in traditional Wisconsin fashion - a beer & brat tailgate party in famous Lambeau Field.
In September 2008, Steve's wife, Barb Engels, inspired her friends and 4 children to walk together as Steve's Stars team, raising over $3,000 for the Indiana Chapter of the ALS Association.
We would be pleased to have you join us in our efforts to defeat ALS .
Sincerely,
Frank & Sue Engels
Pittsfield, MA
10 Oct 2008
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