I am so happy that you all have agreed to “Speak Up & Cure ALS” while I have remained silent. After 3 days of not talking, I realize how tough this really is. If it wasn’t for raising awareness, I don’t think I could continue. Let me tell ya, not talking is no fun! I haven’t left the house today – mostly because I am completely exhausted. My mind was racing all night and I was up after 3:00 am. Ugh!
We are urging everyone to sign up to be an ALS advocate. The ALS Association is keeping track of how many new advocates are signing up this week. Every person counts and we would love you to be one of them.
You might be wondering what signing up to be an advocate actually entails. As an ALS advocate you can help change the laws and policies which affects thousands of people diagnosed with ALS, and their loved ones. If you sign-up you’ll receive important updates and alerts on the latest advocacy issues. From there you simply forward it to your legislators by the click of a button
Starting in 2005, we have made trips to Washington DC each year to participate in the National ALS Advocacy Day. This is where we are able to meet with members of Congress and request their support. At the beginning of each meeting, representatives will ask if anyone in the room is from their district. Most people diagnosed with ALS have trouble traveling long distances, which is what makes our jobs so important! It means much more to representatives when they are able to hear directly from their constituents. Hint..hint…that’s where you come in! Please sign up to be an advocate. Helping us reach out to legislators in regard to ALS, is our top priority. We need to show Congress that more can be done when it comes to finding a cure!
In 2005, our family and fellow advocates lobbied for the establishment of a nationwide ALS patient registry. Then years following, we asked for funding to support it. When the registry actually rolled out in 2010, I cried. I was finally able to enroll my own information into the database. It was so desperately needed. Every patient enrolled, increases our chances of finding a cure. They collect information from each patient with the ultimate goal of identifying commonalities. I am someone that does not have any family history of ALS. I have never served in the military. I have always been active and healthy. For those reasons alone, I feel like my information can contribute towards our goals. This is one example, and I am sure there are many more out there. I hope that answers will come from the registry.
I’ll continue to blog here daily during my “Shut Up & Cure ALS”. Three days down, 4 to go! Become an ALS Advocate.