APPROVE H.R. 7071 Access to proven treatments for ALS!
August 23, 2020
Dear President Donald J. Trump:
All members of Congress and Senate
My name is Deborah Arnold,
I have had ALS for 4 long years and to get right to the point, if the Bill H.R. 7071 is not passed to give me and 30,000 others access to treatment I will die within the next year. This is a "do" or "die" situation for thousands of people like me. I am 62 years old, had an exciting and rewarding life before this hit me. I was in the process of getting my certificate to teach yoga, and with my 30 years as a massage therapist, I was working towards teaching classes to couples to nurture each other.
H.R.7071 – Accelerating Access to Critical Therapies for ALS Act, would allow people with ALS the opportunity to fight and to live a QUALITY life. H.R.7071 will fund early access to therapies that are proven to have success through clinical trials.
There are therapies/treatments available RIGHT NOW that can give thousands of people with ALS the chance to fight and to survive. One true example: An ALS patient was a paraplegic, breathing on a respirator. This same patient was given a treatment that is now in it's 3rd phase of clinical trial. He can now walk, ride a stationary bike and breathe without a respirator. It sounds like a miracle, but it is simply the truth of the science. Unfortunately, this treatment is not available to the 16,000+ American's who are dying from ALS (due to red tape and funding).
ALS has no cure, but there are treatments that can dramatically slow down the progression and allow patients to live a quality life.
Brainstorm is the company the created the very successful NurOwn treatments which is what I am praying for. I understand that we need a certain number of votes to pass the bill to allow us to get our lives back. If any of you ever watched a loved one go through this horribleness I know without a doubt you would pass it! ALS paralyzes the body until a person cannot breathe. We either die through suffocation, or pneumonia. For me personally, If this doesn't pass I i will not hesitate to withdraw my feeding tube feeds and say goodbye to my loved ones which breaks my heart.
Every person battling ALS is a Gladiator, fighting the fight of their lives. They are facing an imaginable evil cruel death. Every single “Congressional Thumb” means “LIVE” or “DIE” in the case of an ALS patient, with regards to H.R.7071. It is a non-partisan Bill. It is not a Bill that is solely about funding and budgets. This Bill is about the right to LIVE. It is about HUMAN LIVES.
I respectfully ask that you review H.R.7071 and make the choice to be a Cosponsor. Your choice could potentially save 16,000 American lives. We with ALS are so few in the grand scheme of things, but we deserve the chance to survive and to fight and to know that our lives matter.
Unfortunately, time is not on our side- so we need help with the red-tape. We need action now. Please put your thumb up and help us live the lives that we were meant to live.
Thank you for your valuable time and for your consideration.
Sincerely,
Ms. Deborah Arnold
561 Crestwood Ave.
Grand Junction, CO 81504
Dear President Donald J. Trump:
All members of Congress and Senate
My name is Deborah Arnold,
I have had ALS for 4 long years and to get right to the point, if the Bill H.R. 7071 is not passed to give me and 30,000 others access to treatment I will die within the next year. This is a "do" or "die" situation for thousands of people like me. I am 62 years old, had an exciting and rewarding life before this hit me. I was in the process of getting my certificate to teach yoga, and with my 30 years as a massage therapist, I was working towards teaching classes to couples to nurture each other.
H.R.7071 – Accelerating Access to Critical Therapies for ALS Act, would allow people with ALS the opportunity to fight and to live a QUALITY life. H.R.7071 will fund early access to therapies that are proven to have success through clinical trials.
There are therapies/treatments available RIGHT NOW that can give thousands of people with ALS the chance to fight and to survive. One true example: An ALS patient was a paraplegic, breathing on a respirator. This same patient was given a treatment that is now in it's 3rd phase of clinical trial. He can now walk, ride a stationary bike and breathe without a respirator. It sounds like a miracle, but it is simply the truth of the science. Unfortunately, this treatment is not available to the 16,000+ American's who are dying from ALS (due to red tape and funding).
ALS has no cure, but there are treatments that can dramatically slow down the progression and allow patients to live a quality life.
Brainstorm is the company the created the very successful NurOwn treatments which is what I am praying for. I understand that we need a certain number of votes to pass the bill to allow us to get our lives back. If any of you ever watched a loved one go through this horribleness I know without a doubt you would pass it! ALS paralyzes the body until a person cannot breathe. We either die through suffocation, or pneumonia. For me personally, If this doesn't pass I i will not hesitate to withdraw my feeding tube feeds and say goodbye to my loved ones which breaks my heart.
Every person battling ALS is a Gladiator, fighting the fight of their lives. They are facing an imaginable evil cruel death. Every single “Congressional Thumb” means “LIVE” or “DIE” in the case of an ALS patient, with regards to H.R.7071. It is a non-partisan Bill. It is not a Bill that is solely about funding and budgets. This Bill is about the right to LIVE. It is about HUMAN LIVES.
I respectfully ask that you review H.R.7071 and make the choice to be a Cosponsor. Your choice could potentially save 16,000 American lives. We with ALS are so few in the grand scheme of things, but we deserve the chance to survive and to fight and to know that our lives matter.
Unfortunately, time is not on our side- so we need help with the red-tape. We need action now. Please put your thumb up and help us live the lives that we were meant to live.
Thank you for your valuable time and for your consideration.
Sincerely,
Ms. Deborah Arnold
561 Crestwood Ave.
Grand Junction, CO 81504
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