The ALS Caucus – How You Can Help

by | Jan 20, 2020 | ALS | 0 comments

Recently, a bi-partisan ALS Caucus was created in order to raise awareness and push for a cure. We’d like to see all 50 states represented on the caucus. (Georgia was recently added!!)

The ALS CAUCUS will bring together Members of Congress from both sides of the aisle to share experiences, exchange ideas, and work collaboratively to find a cure for ALS.

We believe that awareness is key in the ALS fight. Thank you for your time!💙

A FEW MINUTES OF YOUR TIME CAN REALLY HELP. HERE’S HOW:

  1. Learn more about the ALS caucus here.
  1. Find your state’s representative here.
  1. Contact your rep asking them to join or continue to support the ALS Caucus.
    Once you find your rep, look for a Contact button on their site or social media. Tell them how ALS has impacted your life and why it should be important to Congress. (Sample text below).
  • Share your own story about ALS and what it has meant for you to watch Brian or others endure ALS.
  • Ask for this disease to be a priority for research funding. Patients and their families need more support all around.
  • It doesn’t just have to be about the caucus. Just be honest and talk about what a beast ALS is and how we need a cure NOW.


SAMPLE TEXT:
Use the example below to get started and change it up for your story. (Thanks to iamals.org!)

Sample Text
Dear Congressman/Congresswoman ___________, 

I am reaching out to you as my Congressman to flag a Dear Colleague message sent to you on August 28th, 2019 by Rep. Jason Crow (D-CO) asking that you join the ALS Caucus. The ALS Caucus is co-chaired by Reps. Crow (D-CO), Fitzpatrick (R-PA), Sewell (D-AL), and Calvert (R-CA) and serves as a way to bring together Members of Congress from both sides of the aisle to share experiences, exchange ideas, and work collaboratively to find a cure for ALS. Over 85 of your colleagues have already joined! 

The ALS Caucus will work to raise awareness about the challenges faced by ALS patients and their families, think creatively about policy solutions to reduce the negative impacts of ALS, and invest in groundbreaking research to find a cure. As of today, over 50 of your House colleagues have signed on. The ALS Caucus is growing every day thanks to patients, caregivers, and advocates from I Am ALS whose co-founders were recently featured on The Today Show.  

It would mean so much to me, as a constituent, and as well as the rest of the ALS community in your district if you joined the ALS Caucus. If you have questions, need more information about the caucus, or would like to join as a member of the ALS Caucus, please email Santiago.gonzalez@mail.house.gov.   

Patients and caregivers from all over the country have joined our fight: will you?

I look forward to hearing from you.
Thank you,

                   _____________________

 

RESOURCES, UPDATES, & OTHER:

  • For a map of all reps on the ALS Caucus, click here.
  • Georgia residents whose rep is Rob Woodall, please email his aide, Laney Copeland.
  • Click here for sample letters written to all SC representatives related to a recent family’s loss due to ALS. Easily update the red info for yourself, print and mail.
  • Click here for a sample thank you letter written to Terri Sewell of AL.
  • For a great site with resources on the ALS Caucus and more, visit I AM ALS. (Not affiliated, just appreciate them.)

UPDATE!! (2/8/2020) – Just pulled up the map of the ALS Caucus members and GA has representation! Thanks to Rep. Drew Ferguson (R-GA) for joining the team!

UPDATE!! (1/27/2020) – Our congressman’s aide, Laney reached out to me based on the email I sent her. She actively listened and asked questions about ALS. She said the next steps are for our Congressman (Rob Woodall) to dig deeper into the caucus to identify their agendas and priorities, and that they’ll go from there.

 

photo of couple brian and jen parker. brian has a tube coming from his throat because he has als

Hi there! We’re Brian and Jen

Here we share our journey with Brian’s ALS diagnosis, along with stuff we find interesting. We just started beekeeping and love to teach what we learn as we go. Life’s crazy, best to buckle up and enjoy the ride!

CHECK OUT BRIAN’S ART

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