Doug Jury, ALS Advocate and Individual Living with ALS
In April of 2023, ALS volunteers and leading advocates held more than 200 meetings with members of Congress and their staff, focused largely on securing increased federal funding for ALS research. Our organization’s representatives and members of our local ALS community had a productive day of meetings with Illinois staffers. One of those advocates was Doug Jury, who has agreed to share about his experience and tell us more about his commitment to advocating for the ALS community.
My name is Doug Jury, I reside in Roscoe, IL. I was diagnosed with ALS in January of 2020. I am a life long resident of the Northern Illinois area and spent 45 years in the highway construction business and at a Civil Engineering firm.
I was always active and was what some would say fanatical about a healthy lifestyle. Eating healthy, weight lifting, running and later CrossFit workouts were a daily routine. ALS forced me to retire early and has taken away my ability to maintain any workouts that I once thrived on.
Between my faith in God and being the son of a Marine, giving up is not an option for me. I will continue to fight by showing my loved ones and friends that “Fear Is Not My Future” and “Sickness Is Not My Story!” Through the strength my faith brings me and advocating for needed treatments and a cure, I will fight to make ALS a thing of the past.
Did the meetings with staffers meet your expectations? Did they surprise you in any ways?
The meetings were actually less intimidating than I imagined. The conversations with staff members were casual and their attentiveness was what you would hope for. Their interest in our stories was encouraging and heartfelt.
I felt that the staff members had empathy and compassion toward us living with ALS and the stories we shared. Also, they were genuinely receptive toward the additional funding we are asking for.
Do you feel particularly invested in any of the asks made to the staffers? Why?
Yes, my progression is slow compared to most, however, the strength and ability I have lost in three years is cause for me to invest in any manner of awareness and advocacy. Funding for the NIH is particularly close to my heart as I have a relative working in research at NIH. Speaking with him about what is being done at the NIH and the need for continued research toward effective treatments and a cure causes me to push for more funding and a fast track to a cure.
What message would you like to stress to our elected officials a member of the ALS community?
Time is of the essence. A life expectancy of 2-5 years after diagnosis is devastating and unacceptable. ALS being identified in 1869 and a hand full of treatments with no cure is mind boggling with the advancements in technology and medicine. We are way behind, the “Iron Horse” would be pressing us to
do more.
What would you say to individuals considering getting involved with ALS advocacy?
Don’t be afraid. You are needed no matter what your abilities are. Join the party. Join the fight. There are amazing people who are advocating and leading this cause, please join us.