Staying Strong with ALS

Since his retirement from Caterpillar in 2016, Ed Rapp and his wife Ann have made it a personal challenge to support efforts to find more effective treatment options—and ultimately, a cure—for ALS. In addition to founding the Stay Strong Vs. ALS charitable fund, Ed has been working with Answer ALS, a collaboration of more than 20 clinical, research and technology centers across the country. Its mission is to collect and analyze the DNA of study participants, develop their unique stem cells and facilitate individualized medicine solutions. We asked Ed how he’s doing and what the future holds for ALS research.

How are you doing physically and mentally?
I am staying strong both mentally and physically. Shortly after diagnosis, I just came to grips with the new reality at hand. I relied on a strong faith, loving family and sense of purpose to do something positive in the world of ALS. While walking is getting more difficult, I am still on my feet and my strength and breathing capacity is good. I give thanks every day. 

Do the Answer ALS research project and OSF HealthCare Illinois Neurological Institute work together?
Answer ALS and the work at INI are focused on different issues. Answer ALS supports those in search of a cure by trying to prove out the hypothesis that there is not one form of the disease. The project is enrolling 1,000 patients, with six billion data points. We are putting the data on one platform for anyone doing ALS research in the world to access. In essence, we are creating the haystack and turning the world loose to find the needle—the mystery behind ALS. At INI, the work supports those who suffer from the disease by bringing doctors and engineers together to create better assistive technologies for those who work with patients and those who suffer from the disease.

What are the biggest challenges you’ve had to overcome—not only in living with the disease, but getting help for others living with ALS?
The biggest challenge is mental—coming to grips with the reality at hand. However, my faith and family continue to guide me on this journey. The other challenge is getting people across the ALS world to collaborate to search for better solutions and a cure. Great innovation comes from great collaboration. Both Answer ALS and the work at INI are highly collaborative, and it is what drew me to them in the beginning.

How do you see your fundraising efforts helping those in Peoria living with ALS?
A key support mechanism for local patients is the ALS Association and a big part of their fundraising is the annual walk. As a team, we have worked hard to raise the profile of the walk and we are having an impact. The combined efforts of patients, sponsors and volunteers of the local chapter of the ALS Association continue to make a difference. In 2015, the Peoria Walk to Defeat ALS raised $51,500. In the past three years, the Walk has raised almost $400,000 to further the mission of the ALS Association in central Illinois. Participating in the walk is part of my effort to support my hometown of Peoria.

What do current assistive technologies look like, and what lies on the horizon?
The technologies used to diagnose and measure the disease have been around for decades. For patients, there are limited breakthroughs in areas that make patients’ lives more meaningful—manipulation, communication, mobility. INI is uniquely positioned to make a difference in this space. The combination of their doctors, the Jump facility and the partnership with the U of I Engineering school positions them well to make a difference in what is a tough disease. iBi

Learn more about Ed Rapp’s journey and the Stay Strong initiative at staystrongvsals.com.

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