National ALS Advocacy Day

Today is National ALS Advocacy Day. I encourage everyone to email your US Congressman just like I did. Let him/her know that funding and research is much needed. Here is my letter if you would like to use it as a template to your representative. If you are in Texas you can Google “who represents me” and find your representative.  Love to you all.

The Honorable John Carter

I am emailing you to support the National ALS Advocacy day which is today, May 10, 2016. I write as a wife of a person with ALS. I write to you because this disease is taking my husband and my son’s father. This disease is taking me along with it. My future will no longer be with my husband of 26 years. I no longer get to wonder how we will be when we become grandparents; there will no longer be we. That is because ALS is 100% fatal. It is an UNDERFUNDED disease and THAT is UNACCEPTABLE! Barriers to funding, research and assistance need to be removed. This disease has only ONE drug approved and it will only extend life by one to two month. UNACCEPTABLE!

I am asking you to support all legislation that will allow for increased funding for ALS research. I know that you voted against the 21st Century Cures Act, which is why I want to stress the importance that your position with regard to drug research and develop needs to shift. You represent me. You represent my husband. You represent many people in Texas that are for increased funding and accelerated development of drugs for this horrific disease. We are doing EVERYTHING we can but there will be no stopping ALS unless a cure or management of the disease is discovered.

Please be aware and support with your vote the following:

  1. Appropriation of $10 million to continue the National ALS Registry at the CDC and Prevention- enactment of P.L.110-373 Funding for FY2017 to continue the registry, fund-related ALS research and help people with ALS enroll in the registry;
  2. My husband’s diagnosis of ALS was most likely due to his service in United States Air Force. Please know and remember NOT ALL CASULATIES OF WAR COME FROM BATTLE, THEY CAN HAPPEN YEARS LATER! Appropriation of $10 million to continue the ALS Research Program at the DOD The current level of funding leaves more than 95% of submitted projects unfunded with opportunities to discover and deliver a treatment to veterans will be lost leaving them with no effective treatment;
  3. Senate Health Innovation Package/Enact the Dormant Therapies Act. Remove the regulatory barriers and limited incentives to pursue innovated new treatments. Please support the Dormant Therapies Act;
  4. Preserve Access to complex rehab technologies and work to have it implemented without any more delay; and
  5. Waive the five month waiting period for social security. ALS patients do not have 5 months to waste waiting on SSI benefits to be paid because this disease moves quickly and does not wait to ravage a person with ALS or his/her family.

You may contact me at anytime to discuss how this disease “that happens to other people” has impacted my family. We are now “other people”.

 

 

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