ALS Activist Ed Rapp to Be Honored by Les Turner ALS Foundation
Since being diagnosed, Rapp has directed his efforts toward ALS advocacy. Those efforts will be recognized on Feb. 22, when he receives the Harvey and Bonny Gaffen Advancements in ALS Award.
The Les Turner ALS Foundation will present Rapp with the award at its annual Hope Through Caring Gala at the Radisson Blu Aqua Hotel in Chicago. Emceed by WGN-TV anchor Dina Bair, the event is expected to draw more than 600 guests, and will feature a reception, raffle, auction and entertainment by the Chicago Players. Dinner is included.
The award recognizes a significant individual achievement or body of work that furthers ALS research, treatment, or clinical care.
It’s been quite the journey for Rapp. For nearly a year, the Caterpillar group president sought to learn why his left foot dragged when he jogged. After seeing several chiropractors and orthopedic physicians, and undergoing multiple X-rays and MRIs, he and his wife turned to the Mayo Clinic, where he was told he had ALS. That diagnosis was confirmed at the Les Turner ALS Center at Northwestern Medicine.
Although he had to leave a career he loved, Rapp considers himself fortunate that he still can speak and breathe without effort. He is, though, experiencing a slow, progressive loss of mobility, and relies on arm crutches for walking.
Rapp is focusing on those areas in which he can have the greatest impact on the ALS community. That includes supporting ALS efforts in his hometown of Peoria, Ill., and current home of Raleigh, N.C., as well as working to bring together physicians and engineers to produce better assistive technology.
He is a funder and board member of Answer ALS, a global project dedicated to developing and implementing a unified strategy to stop ALS. The organization’s mission is to build a database of the most comprehensive clinical, genetic, molecular, and biochemical assessment of ALS. Some 5,600 individuals are diagnosed with the disease each year.
The effort currently includes almost 24 research centers — the Les Turner ALS Center is one — and eight clinics and 1,000 patients. Answer ALS shares data with scientists around the world.
“In a strange way, there are many gifts that have come with my diagnosis,” Rapp said in a press release. “One gift has been finding a purpose through my involvement with Answer ALS, a project where I feel I can make a difference. Another gift has been meeting incredible people — doctors, researchers, nurses, patients and caregivers — whose paths I would not have otherwise crossed. I gain strength and inspiration from those I have met on this journey.”
A decade ago, Rapp said, sequencing a human genome cost more than $1 million and took 4.5 months. Now, such sequencing costs less than $1,000 and can be completed in under an hour. That’s progress, he said.
“In the simplest of terms, we are building the haystack and enabling analytics, AI and new emerging technologies to discover the needle, or the subgroups and pathways that cause this disease,” he said.
Andrea Pauls Backman, the foundation’s CEO, said Rapp’s contributions to the ALS community are “profound and immeasurable.”
“We are proud partners with Answer ALS, and under Ed’s leadership of its advisory board, Answer ALS is uncovering pathways we have been searching for decades,” she said. “After two years of collection, we are excited to see the shape of ALS come into greater clarity with some of the first findings from this important endeavor. And without Ed’s heart and passion, we know none of it would be possible.”
The foundation will also present Matt Creen with its Hope Through Caring award for his support of the Chicago-area ALS community. Creen will be recognized for his commitment to inspiring hope and supporting the Chicago-area ALS community. Through the annual Matt Creen Golf Invitational, the Creen family has raised more than $450,000 to help those living with ALS and to spread awareness about ALS and the foundation.
Former NFL player Steve Gleason will present the award to Creen via video. Gleason is founder of Team Gleason, which has provided nearly $10 million in adventure, technology, equipment and care services to more than 15,000 ALS patients.
Tickets to the event are available at this site. Sponsorships are also available. Patients and their caregivers may attend for free.