Congressional Bill to Help ALS Patients with Expanded Access

Hi, my name is Mayuri Saxena, and I have A.L.S. You may remember the Ice Bucket challenge from a few years ago and you may have heard of the disease. 

Here's the thing... A.L.S. is not as uncommon as people think. The lifetime chance of getting what is commonly known as Lou Gehrig's disease is actually 1 in 350 in men, and 1 in 400 in women. The difference is that A.L.S. kills so quickly that the number of living patients at any one time is relatively small -- which also means that there is not a large population of victims to agitate for research and relief. The number of ALS cases across the globe is expected to increase 69% by 2040.

This is where you come in. We've made it dead simple easy for you to email your local representatives (along with exact email templates and call scripts) to help garner support that will introduce expanded access to ALS treatment and research through S.1813. 

Chances are someone you know or love will die from ALS.​

It takes 10 minutes to send the emails out (with a couple of clicks) and you'd be helping ALS patients worldwide. Just enter your name and email to get started to help us:

Here's a few more things you may not know about ALS:

  • ALS impacts Military Veterans 2x more and is 3x higher with members who have been in the Gulf
  • The Great Lakes area in the United States has highest instance primarily due to agro and industrial toxins
  • ​The financial cost to families of persons with ALS is exceedingly high. It is estimated that in the advanced stages, care can cost an average of $200,000 a year. Patients' and relatives' entire savings are quickly depleted because of the extraordinary cost involved in the care of ALS patients.
  • ALS is 100% fatal, and results in approximately 5K deaths per year consistently.
The stats may be dire, but all is not lost. 

The key to ALS research is to get expanded access to treatment, which increases the amount of data, increases help for ALS patients, and therefore accelerates the likelihood of finding a cure. 

There are bills both in the Senate and Congress that does exactly this with bi-partisan support and co-sponsors. BUT... as with competing priorities in government, we need to show our support for the bill by emailing and calling our local representatives.
We won't spam you.