Mary Johnson’s SSDI Journey and the Power of #ALSAdvocacy

Meet Mary

For those who may not know her, let us introduce, Mary Johnson.

Mary’s family makes up part of the 5-10% of those in #OurALSCommunity who experience the devastating effects of familial ALS. To date, she has lost over a dozen members of her immediate family, with some living only a few months after diagnosis.

Having seen the effects of ALS on her family for years, Mary Johnson officially became an ALS Advocate in 2007, the year her sister was diagnosed.

Since then, she has committed her life to making a difference for #OurALSCommunity. Every year, Mary travels to Washington D.C., pictures of loved ones lost in hand, to make an emotional impact on elected officials and implore them to take action in enacting laws that have shaped the future of ALS legislation.

“As an ALS Advocate, I feel that my loved ones have not suffered in vain, and that we are going to end this terrible disease and all of the pain that comes with it for future families affected by ALS.”

Recently, Mary found out that she is the only person in her family who does not have the mutated gene associated with the familial form of ALS. As a result, she has vowed to continue to use her voice to advocate on behalf of the loved ones she has lost.

Fighting to Eliminate the SSDI 5-Month Waiting Period

Having experienced ALS many times, Mary was all too familiar with the 5-month waiting period placed on individuals with ALS to receive SSDI benefits/Medicare.

She knew firsthand that families living with ALS did not have 5 months to wait to receive benefits. At the age of 25, Mary’s niece was diagnosed with the bulbar onset form of ALS, and unfortunately lost her battle one month before becoming eligible to receive SSDI benefits. This left her family with thousands of dollars in unpaid bills to reconcile.

Knowing how limiting the waiting period for SSDI benefits could be with a disease like ALS, Mary knew that her story had to be heard. Although she had been advocating for those with ALS for years, it was in 2018, when Mary attended the national ALS Advocacy Conference, that she was personally asked to share her story with the Associate Commissioner of the Office of Disability Policy for Social Security, Gina Clemons.

A few weeks later, she wrote a letter, addressed to Ms. Clemons, in which she attached the photos of her loved and outlined the devastating effects of the disease on her family. When asked why she decided to include personal photos, Mary responded,

This disease is so random, and the age range of those diagnosed is so widespread, that it can be hard for others to understand the impact that this disease has.

Every year since, Mary has lent her voice and her story to countless elected officials, appealing for the elimination of the 5 month waiting period for Social Security Disability Insurance (SSDI) benefits for those living with ALS with pictures of her loved ones in hand as she marches up the steps of our Nation’s Capitol.

And her tireless advocacy efforts have paid off. On December 22, 2020, President Trump signed the ALS Disability Insurance Access Act of 2019, into law, eliminating the five month waiting period for those living with ALS to receive SSDI Benefits.

When asked how she felt after hearing the news, Mary said,

I finally felt like I could breathe, knowing that no one else would have to go through what we went through. It felt like all that work had paid off.

“The cure for ALS and other motor neuron diseases is on the horizon, but progress only comes when enough people are willing to advocate for change. We need YOU.”

Mary Johnson

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