Ed Rapp was taking one of his weekly jogs when he noticed something strange. Every 15 or so steps, his big toe would involuntarily drag. He did not initially think much of it. But over the next month, jogging became more difficult, and he eventually lost his ability to walk.
In November 2015, Rapp, a Cooper County local, was diagnosed with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord and diminishes the muscle’s ability to function. His doctor gave him two to five years to live. Today, he walks with two arm crutches and has to actively think about moving his muscles.
"With every step I take, I'm reminded of the disease," Rapp said. "Because of that, I'm reminded to seize every one."
Rapp received the Harvey and Bonny Gaffen Advancements in ALS Award last Saturday at a gala hosted by the Les Turner ALS Foundation for his work on the research project Answer ALS. Over the past five years, Answer ALS has collected data from 1,000 people with the disease creating a comprehensive clinical, genetic, molecular and biochemical assessment of ALS. The results are shared on their website openly accessible to the global research community. Rapp signed up as the seventh patient in the program almost immediately after diagnosis.
"We knew we were going to get involved with a broader cause," Rapp said. "We just decided after discussing it as a family, we had a responsibility to try to make a difference."
The goal of Answer ALS is to better understand the disease by harvesting large scale data in hopes to inspire innovation in creating effective drug solutions.
There is no cure for ALS and treatment is non-specialized, meaning the same drugs are given to each patient to slow down the disease’s progression. Rapp said ALS should be studied more like cancer with a multitude of possible medications. Drugs on the market today only give patients a few more months to live. Over the last six months, Answer ALS has released its first round of data.
"There is a lack of understanding the root cause of the disease," Rapp said. "Some of the initial data is starting to show some clusters which could indicate different pathways. So I remain optimistic in terms of the potential in the project."
The database will continue to build over the next 18 to 24 months. The project’s goal is to raise $42.5 million, $40 million of which has already been raised. Most of the donors are private companies like IBM and Microsoft, as well as individuals fighting the disease. Ten years ago, to collect a genome sequence, a crucial step in a clinical trial, it cost more than a million dollars and took five months. Today, thanks to considerable advancements in technology, genome sequencing can be done in an hour and costs less than $1,000. Answer ALS has conducted hundreds.
The disease is not considered genetic and most diagnoses are sporadic or random. Growing up in the small town of Pilot Grove, Rapp is the only one of his seven siblings affected by the disease. He knew about ALS through things like the ice bucket challenge and a colleague at the company Caterpillar where he worked 37 years who had been diagnosed. In 2015, Rapp said the doctor advised him to start forming a support system for himself in the years to come. He knew with his large family and loving children, creating a support system was the least of his worries.
"That's a big part of who I am," Rapp said. "I’m a good Midwesterner, that’s my background and upbringing, and I understood from the beginning the best way to support those around me was to demonstrate strength and resolve as I took on the disease myself."
It has been four and a half years since his diagnosis. His strong faith, three grandsons ages five, three and one and his work with Answer ALS encourages him to keep pushing forward each day.
Without successful drug treatment, the disease will eventually affect most of his voluntary muscles. Commonly, ALS patients die from suffocation as their diaphragm seizes to assist them in breathing. The disease does not affect the brain and patients remain cognitively healthy throughout the disease’s progression. Rapp believes that this is the most difficult part of the disease, yet he holds an optimistic disposition.
"My grandkids are a big part of my therapy," Rapp said. "This is the only way they've ever known me. They look at me and call me Papa and expect me to get on the floor and play with them. It takes away any thought of the challenge at hand."
Rapp now lives in North Carolina with his wife, Ann. He plans to continue work with the research project.