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Official IAMALS YouTube video

Good morning! My name is Robert Ordway and I work for U.S. Senator Mike Braun of Indiana. Today, I am speaking in my personal capacity to honor my dad, Doug Ordway.

I can’t remember the exact date, but it was some time in 1998 when Mom and Dad came home from the Cleveland Clinic, a five-hour drive from our home in Northwest Indiana. I was 13 and my sister Jennifer was just 9 years old.

When the clinic told dad that he had ALS, the only advice they gave, was for him to go home and get his affairs in order. At the time, there were no local support groups or assistive technology much less treatments to give our family hope.

To make things more difficult, family problems arose as mom fought a lifelong battle with bipolar disorder, which ultimately led to her suicide years later in 2009. That challenge forced me into the primary caretaker role but I had help from family, especially dad’s sister, Aunt Sue.

Doug Ordway made it over five years, living with ALS far longer than any doctor’s expectation. He died just a few months after I started college in the Fall of 2003. Instead of seeking help afterward, I just bottled up all the anger, pain and resentment I had from the situation. Most of it was directed at God, some at family members.

It wasn’t until the ALS Ice Bucket Challenge of 2014 that these buried wounds were reopened against my will. As much as I hated the pain that resurfaced, I was also overjoyed to see this disease finally get the national attention and funding it deserved.

This is where God comes back into the picture, and shows his eternal goodness.

By some happenstance, I was hired onto Senator Braun’s DC staff when he took office in 2019. That Fall, he allowed me to write a personal op-ed about ALS in my local newspaper. Shortly thereafter, the late Corey Polen, an ALS patient in Indianapolis, reached out to me regarding the state of politics when it came to finding a cure. After I handed him off to our healthcare staffer, Reilly Inman, and Legislative Director, Katie Bailey, it was off to the races.

With the help of IAMALS, Senator Braun and Senator Coons of Delaware, founded the bipartisan ALS Caucus with 12 members. Together they went on to file an annual resolution designating May as ALS Awareness Month. By the end of 2020, they passed into law, the ALS Disability Insurance Access Act.

That summer, as COVID raged, Senator Braun introduced the Promising Pathways Act, a bill to create a rolling, real time drug approval pathway, to speed access for individuals with rare, progressive, and terminal diseases such as ALS. 

To promote the bill, Senator Braun hosted the first ever patient driven hearing in the Aging Committee last October where Brian and Sandra gave an amazing testimony.

Last week, he reintroduced PPA 2.0 with endorsements from over 100 groups. Senator Braun is retiring from Congress at the end of this year, however, this bill is one of his top priorities to see through to the finish line.

To support his effort, I will be cycling over 750 miles from Washington DC to my home in Northwest Indiana this summer to raise money for IAMALS and to promote PPA 2.0.

Lastly, I am finalizing the chapters for my book, Millrat: A Memoir about ALS, Adversity and the American Dream. My family didn’t have religion or money but Doug Ordway passed along some timeless principles that I think are worth sharing with you when it comes to the fragility of life and how we ought to treat each other.

When I look back at how ALS has impacted my life over the past 25 years, I am reminded of a book by John Paine titled, The Luckiest Man: How a Seventeen-Year Battle with ALS Led Me to Intimacy with God. Even after obtaining every possible level of what we call success today, it took an ALS diagnoses to get John to step back, reflect, and fully submit his life to God.

Thank you to Brian and Sandra for founding this amazing organization as well as the rest of the IAMALS team that supports their effort every day. I appreciate the opportunity to share my family’s story and hope that Doug Ordway inspires you to continue the fight to End ALS. Thank you!  

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