[Congressional Record Volume 167, Number 145 (Tuesday, August 10, 2021)]
[Senate]
[Pages S6272-S6273]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




         RECOGNIZING THE FLORIDA CHAPTER OF THE ALS ASSOCIATION

 Mr. SCOTT of Florida. Mr. President, ALS, or amyotrophic 
lateral sclerosis, is a progressive neurodegenerative disease that 
affects nerve cells in the brain and the spinal cord. ALS causes 
progressive degeneration of these motor neurons leading to their death. 
There is no cure for ALS, and although the mean survival time with ALS 
is 3 to 5 years, some people live 5, 10, or more years. While ALS is 
considered a ``rare'' disease, the reality is that 500,000 people alive 
today will eventually die from the disease.
  I have seen how devastating and heartbreaking an ALS diagnosis is for 
families. Over time, this disease robs people of the ability to walk, 
talk, move, and breathe. In most cases, members of a patient's family 
eventually need to become full-time caregivers to help navigate all the 
challenges that ALS creates.
  I want to commend the Florida chapter of the ALS Association for 
their work to fight ALS on all fronts and support the 1,300 families in 
Florida who are battling this disease each day. They work closely with 
a network of 10 ALS multidisciplinary clinics in the State to ensure 
those families have access to critical support as they fight this 
disease. Additionally, they provide a variety of programs and services 
that are designed to help ease the burden of ALS.
  I want to thank the ALS staff and their many volunteers for their 
service to the community. I want to specifically recognize three 
individuals who are battling ALS.
  John Robinson is a recently retired, 32-year veteran of the U.S. 
Army. Most recently, he served as the chief warrant officer of the 
Army's field artillery branch. In the same way that he served in the 
military to protect our freedom here at home, he serves in the ALS 
community to help those coming along behind him with ALS. Just as John 
protected our freedom, he is a staunch protector of hope in the ALS 
community. John wants the next generation of those diagnosed with this 
dreadful disease to have better care, more effective treatments, and 
the possibility of improved prognosis and quality of life.
  Troy Fields is a husband and father of four living with ALS in Tampa, 
FL. Prior to his diagnosis, Troy worked at a global financial 
technology company for 26 years. Troy believes acceptance never means 
that having ALS is okay. It simply means one is willing to deal with 
it. Whether he is talking about advocacy with the ALS community and 
encouraging others to take action or talking one on one with a chapter 
board member about outlining strategic goals, Troy's strategy for 
coping is to live in the moment, accept what he cannot control, and 
work to change what he can.
  Diane Mummaw is from Deltona, FL, and is the mother of two children 
and a recently retired small business

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owner. Despite battling ALS, she considers herself lucky because she is 
one of the precious few who has survived more than 5 years since her 
diagnosis. ALS affected her ability to function but it did not take 
away her ability to work for improvement. As an entrepreneur, she took 
on living with ALS with the very same grit, fortitude, and 
determination that she used to build and grow her business.
  These three Floridians show so much strength and hope in the face of 
adversity, and I thank them for their many contributions to the ALS 
community and to our State.
  Last year, Congress passed the ALS Disability Insurance Act to 
eliminate the 5-month waiting period for Social Security Disability 
Insurance benefits for disabled workers with ALS. I was proud to 
support this important legislation and will keep working to support 
Floridians with ALS and help to fight this horrible disease on all 
fronts.

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