In March 2018, my best friend Rory Shrum, (age 50) was diagnosed with Bulbar ALS (Lou Gehrig's Disease). Most ALS patients have a life expectancy of 3-5 years following diagnosis, although ~10% of ALS patients survive for 10 years or more. Bulbar ALS is the most aggressive form of the disease, with the shortest life expectancy outlook.
Before his diagnosis, Rory was a corporate pilot. He and Tanya have three adult children, one of whom is still in college. Since his diagnosis he has been grounded from flying and is currently on Short-Term Disability. This has resulted in a 60% cut in the family's income.
As a graduate of the U.S. Air Force Academy who served his country for over 20 years in both the Active Air Force and in the Reserves, Rory investigated possible VA benefits. Since he is retired from the Air Force Reserves his retirement benefits do not kick in until he is 60. He discovered that those who serve in the military have a 1.5x - 2.0x increase in the chance of developing ALS, although the cause is unknown. Since there is this established connection between military service and ALS, Rory was able to quickly receive a 100% disability rating from the Veteran's Administration. This will remedy some of the financial shortfall, leaving them with only a 36% decrease in income.
ALS is not curable, but there is a lot of research underway to slow and (hopefully) ultimately cure this terrible disease. Rory has participated in two drug trials, to date. Because of this he is now authorized to use one of the drugs on an "Open Label" extension while the drug continues through the testing/approval protocols.
Currently Rory is paralyzed and unable talk without electronic assistance (like Dr. Stephen Hawking). He is confined to a motorized wheelchair and now needs modifications to the bathroom to access showers and other bathroom facilities. This includes making the shower wheelchair friendly. The cost estimate for modifying the master bath to ADA standards is $45K due to the need to re-plumb the bathroom and modify load-bearing walls. We are looking at alternatives to cut costs, but time is of the essence!
I am seeking to raise money for Rory and Tanya make these modifications and to help offset some of his income loss. The latter will help them to keep their home and keep their daughter in college.
Time is critical so we need your help NOW! Please give generously.
Rory fought for our freedoms!
Let's help him fight for his life!
This is Rory's family at his son's wedding PRIOR to his illness.
NOTE: Funds raised in excess of the Shrum's need will be donated to IRS-recognized charities.
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