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In July 2008, Bob Schoeni was diagnosed with ALS. To support Bob and his wife, Gretchen, a group of friends, colleagues and neighbors got together to see how they could help fight against ALS. They quickly learned that there is no cure or treatment for ALS and that research to find a cure for this devastating disease is dramatically under-funded. ALS is considered an orphan disease, which means that it affects under 200,000 people nation-wide at any one time. Pharmaceutical companies are reluctant to invest in research for these diseases because they do not promise enough profitability. However, if life expectancy could be increased, the pharmaceutical industry would certainly invest research money in finding treatments. There are as many people diagnosed with ALS as there are with Multiple Sclerosis (MS), which is now considered treatable (and profitable). Thus, in response to a disease that steals one's ability to move, we created Active Against ALS, to encourage people to be active (both physically and in the community) while raising funds for ALS research and building awareness about the disease.
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Active Against ALS draws its strength from the energy, enthusiasm and creativity that people of all ages have brought with this fight. We specifically organize activities that include children and young people so we can foster compassion and community spirit in the next generation. We believe that our efforts have helped us demonstrate that the world is a better place when we all work together. Alone, we cannot make ALS disappear, but together, we create a caring community and make a difference. Bob believed that the community support of Active Against ALS was some of the best "medicine" that he received. With a warrior's spirit, Bob fought the good fight and lived the life he loved until he passed of complications from ALS on October 13, 2021. 
Please join us as we continue to honor Bob, and all people whose lives have been forever impacted by ALS. Since 2008, Active Against ALS has donated over $800,000 to the most advanced and progressive ALS research. ​​We are confident that our efforts, along with the efforts of organizations around the country, will ensure that treatments and ultimately a cure for ALS will be developed soon. ​

ANNUAL BOARD MEETING UPDATE

Our annual meeting was held on November 7, 2022. We heard updates from our board members as well as from members of our Scientific Advisory Board. Dr. Tiziana Petroziello, our 2022 recipient of the Robert F. Schoeni Award for Research, gave a short presentation on her proposed work, Determining the functional consequences of the chimeric YAF2-RYBP fusion gene in amyotrophic lateral sclerosis. If you would like to view a recording of the meeting, please click here.
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Thank you to all who attended and especially to Dr. Petrozziello and our Scientific Advisory Board.

- MEET OUR BOARD -

We invite you to meet the Active Against ALS Board members! Click on each picture to learn more. 

Jennifer Collins

Co-Chair

Susan Miller

Co-Chair

Laura Stidham

Vice-Chair

Kathy Siler

Secretary

David Lowenschuss

Treasurer​

Pat Bisgaier

Grady Corcoran

Anne Gilbert

Gayle Rosen

Felicia Smith

Shelly Webber

​Elisabeth Weinstein

Support Team

Anne Steinhauer

​Administrator/Bookkeeper​

Kristen Freshley

​Communications

Sara Robins

​Communications
"Since the founding of Active Against ALS, our family members of all ages have served on the board, and volunteered for or participated in a variety of events. The compassionate and supportive community of Active Against ALS continues to provide a positive outlet for our grief, and inspires us to raise awareness and research funds to defeat a disease that has claimed the lives of six of our family members."
- Kathleen Siler, Board Member since 2017