DEFEATING ALS

 Raising Awareness and Funding for ALS Education and Research

Home Events About ALS About Us How You Can Help Contact Us  

Events > In The News > ALSA Indiana Newsletter, Summer 2006

Friends Supporting ALS - 26 385 4 Defeating ALS

The ALS Association of Indiana newsletter, Summer 2006
By Sue Engels

On May 21st, over 50 people from 4 extended families came together in Green Bay WI to raise awareness and funds for ALSA-Indiana. Frank Engels III and Sue Engels led a team of 19 runners and walkers to go "26 385 4 Defeating ALS". Our cheering section counted over 30 people in person and many more via cellphones and email watched our progress. This effort raised over $7,500 in donations for The ALS Association of Indiana.

What motivates a 52 year old man to start training to run 26 miles 385 yards for the first time ever in his life? And get his extended family to join him in his quest? The answer is frustration blended with a little anger.

Sue's mother Marie Alger, a native of Green Bay, died of ALS in 1988. During her struggle with this disease we often talked about if only it was ten years later, we were sure there would be something that could be done. In 2005 Frank's brother, Steve Engels, was diagnosed with ALS.

Time had not worked to find a way to treat this disease. The hopeless feeling was back.

So the concept of our fundraising effort, "26 385 4 Defeating ALS", was born and we chose to direct donations to the ALSA Indiana center where Steve and his family receive support and services. The network of ALS Association chapters, which were in their infancy stage in 1988, now provide a ray of hope for those affected by ALS.

The Green Bay marathon turned out to be the perfect venue for our fundraising effort. Many of Sue's family still live in the area. Family members from Ohio, Indiana, Wisconsin and Illinois could easily get there for the weekend. Then, to our surprise, more family from Texas, Connecticut and France came the distance to go the distance! And Frank and Sue met in college in Green Bay - and fell in love on the bridge at marathon mile 20. The last mile of the marathon allows participants to run into famous Lambeau field (home of the Green Bay Packer football team) through the players tunnel onto the field. Then, at the finish line, no banana and Gatorade like Boston - this is Green Bay, so there was a giant tailgate party with bratwurst and beer!

For our fundraising, we launched a web page, www.defeatingals.com, and started contact friends from as far back as 35 years and told them the story of ALS. We were more than a little surpised at the outcome. Checks and letters began to arrive from all over the county - California, Michigan, Arizona, Maine and more. People were surprise to learn about ALS and our inability to treat it. They were also outraged and concerned that there is not national database to help researchers find patterns and clues about this fatal disease.

Now our legs are rested and we are looking for more to do. We are focusing our efforts on bringing awareness to ALS Registry Act (S.1353), that supports creating the national data base that is so badly needed to help drive progress. We encourage others to work together, and with their local ALSA chapters, in an effort to achieve greater awareness and recognition of this disease nationwide.

For further information, contact:
Sue and Frank Engels
71 South Church St. N303
Pittsfield, MA 01201
732-991-4381