Thank you for helping me reach my Walk to Defeat ALS® fundraising goal! This is an exciting opportunity for us to work together to support those affected by Lou Gehrig's Disease and to spread awareness of the urgency to find treatments and a cure.

Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease. I encourage you to get your friends, family, neighbors and coworkers involved!

Why We Need Your Help

Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

This crippling disease can strike anyone. Presently there is no known cause of the disease though support is bringing researchers closer to an answer. In the meantime it costs an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join me in walking.

Why I'm Involved

A little over 20 years ago, a beloved, young high school teacher from Solon, David Yates, was diagnosed with ALS. Dave was a friend of mine. I had the opportunity to be a very small part of his caregiving for several months until his death in 2000. I say "very small" because that's what it was compared to what I took away from that relationship. The power of the human spirit to overcome the physical limitations inflicted by this disease was on display virtually every moment I was around him. His inability to talk was just an obstacle in getting his message to us. His inability to write did not stop him from planning his family's future. His inability to walk did not keep him from encouraging and coaching those around him to play soccer, swim or run marathons. He was simultaneously an inspiration and a reminder of how cruel this disease can be.

Because of Dave, I got involved with the Northern Ohio Chapter of the ALS Association shortly before his death, committed to trying to do whatever I could to help families similarly afflicted until a cure could be found. I have been on the Board for over 10 years and currently serve as it Chair. Over that time, I have, unfortunately, heard dozens of stories from families and friends of ALS patients, all with the same heartbreaking struggles to deal with the disease and, ultimately, the loss of a loved one. In fact, just over 4 years ago, it tragically impacted my family again - my daughter-in-law, Amanda, lost her grandfather, Harry Claycomb, a veteran, to ALS. So I will be walking in his honor and memory as well. 

What Progress Has There Been in the Fight Against ALS? 

You all remember the incredible frenzy from the Ice Bucket Challenge (IBC) during the summer of 2014. In the first five years after that phenomena, an independent study found that, from the $115 million raised nationally during the IBC, the Association awarded over 300 grants totaling nearly $90 million toward research around the world! (By comparison, research grants awarded in the two years prior to IBC averaged about $5.2 million per year - nearly a 250% increase in research funding annually!) 

Maybe more importantly than the funding the ALS Association was able to provide through these grants was the leverage that it brought to grow the research even more. In a survey, about 40% of the recipients of IBC grants (representing about $40 million of funding) reported that, directly as a result of receiving these funds, they received subsequent awards from other sources totaling $124 million to continue their research! Extrapolating that, it's possible that the Ice Bucket Challenge could have directly led to more than a quarter billion dollars of new research in five short years!  

So what has come of all this additional research? Simply, maybe more than has been achieved cumulatively in all prior years!  We have quintupled the number of researchers studying the disease using our funding. Grantees reported that their Association funding accelerated their research productivity and enabled them to form collaborations with not only other researchers but also clinicians and people living with ALS. They also reported the key outcomes being identification of new therapeutic targets, gene discovery (5 new genes with ALS links were discovered!), initiation or completion of clinical trials, and identification of new biomarkers. 

In addition to the research funding, a significant portion of IBC funds were used to grow the Association's two clinical grant programs, the Certified Treatment Center of Excellence (CTCE) and Recognized Treatment Center (RTC) programs, both of which primarily provide multidisciplinary ALS care for patients. (Locally, the Cleveland Clinic, University Hospitals and the Louis Stokes VA Medical Center are part of these programs.) In addition to CTCEs and RTCs, local chapters of the Association work closely with other ALS clinics called Affiliated Clinics. The number of CTCEs, RTCs, and Affiliated Clinics grew by more than 50% from 100 before the Challenge to 156 after this campaign, and  the annual funding for the existing centers was doubled. By investing in this expansion in treatment centers, the Association endeavors to increase access to ALS care for patients and their families. 

The progress has been unprecedented in the long fight against ALS. This was made possible not only by funds provided directly from the Ice Bucket Challenge, but also from ongoing donations from people like you. If you participated in the Ice Bucket Challenge, or have given separately to the organization, then you helped make these critical developments possible! I can't thank you enough!

For three years, I had the opportunity to attend the ALS Advocacy conference in Washington DC. There, I got to meet with hundreds of patients and their families, all trying to advance our cause as we met with our respective Senators' and Congressmen's staffs. Their stories and dedication were incredible, a true inspiration - they reflected the hope that they had been carrying for many years. But those patients, families and friends know that we still don't have a cure or even a life saving treatment - and that's why we continue the battle. As one patient told us volunteers: "Your work is our hope!"

What's Next?

These national developments have excited the entire ALS community with hope of getting closer to a cure and treatments. In the meantime, though, and closer to home, the mission of the ALS Association Northern Ohio Chapter is primarily to provide services to patients and families dealing with the disease locally. And that's where the money raised in the Walk to Defeat ALS will be devoted.

But the pandemic has changed our Walks again this year. Health and safety restrictions advise us against holding our large group Walk, especially considering the compromised immune systems of the many patients who attend our walks. So, instead, like last year, we're holding "Mini-Walks" of small groups around neighborhoods, parks, even our own homes. So, on Sunday September 12th, 2021, Team Dave Yates will be walking in the Metroparks in Dave Yates' and Harry Claycomb's honor and memory. It will be a small group but you're welcome to join us - we'd love to see you. Please consider donating to my Team (just click on the link above)! My team fundraising goal is $5,000, and I hope you'll help me reach it. This has been a very challenging 18 months for fundraising but our local patients and families still require the valuable services that our chapter provides.

Thank you for your consideration in helping to support our cause. If you'd like more information on how you can help in other ways, please drop me a note (wmosley238@gmail.com) and I'd be happy to talk with you any time.

Wayne