ALS Advocacy Days 2010

Here we are in late March and it's time to start planning what to say this year to my Senators and Representatives in Washington. I am planning on attending the National ALS Advocacy Days Conference and looking forward to having another opportunity to meet with my members of Congress and try to get them to join in the cause against ALS. When I look back on the last five years it has been miraculous how much policy change we have made in such a short time. The first time I went to ALS Advocacy Days was in 2005 and most of the talks that we had with our Senators and Representatives were to introduce them to a disease that they had never heard of. There were tears, hugs, and lots of pictures of family members being passed around. There was, at the time, NO funding for ALS research and basically a general lack of information for everyone. Now, five years later, we can proudly say that we have accomplished a LOT. There is a completely different feeling of hope at the conference each year, and people are extremely optimistic that a cause, a drug, or a cure could be just around the corner. Now when we meet with our members of Congress they remember us and remember what we are fighting for. They know why we come to Washington each year and they can see on our faces that we mean to keep coming back every year until ALS is eradicated. It is really difficult to go back each year and know that a lot of the PALS (people living with ALS) that were there the year before have lost their battles with ALS, but we have to remain hopeful that our country is on our side and will help us find funding. The brochure for this year has a list of the accomplishments that we have made since we started lobbying on the Hill, and it is pretty impressive.

Our Advocacy Accomplishments Include:

• 24-Month Medicare Waiver-- Enacted historic legislation to eliminate the 24-month Medicare waiting period for people with ALS, the only time Congress has amended this law.

• Government Funding for ALS Research-- Generated more than $425 million for ALS research over the past10 years and increased annual government funding from just $15.1million in 1998 to more than $60 million in 2009 alone.
  

• Veterans Benefits-- Advanced regulations that establish ALS as a service connected disease. Veterans with ALS and their survivors now have access to more than$500 million in benefits, including monthly disability compensation and full health care.
  

• National ALS Registry-- Enacted the ALS Registry Act to create the first nationwide ALS patient registry, which may become the single largest ALS research project ever. Over $15 million appropriated to date!
  

• Presumptive Disability Ruling-- Established a presumptive disability ruling for ALS at the Social Security Administration, helping to ensure timely access to disability benefits for people with ALS.
  

• DOD Translational Research-- Partnered with Congress and the Department of Defense to create the ALS Research Program, which is the only ALS specific program at DOD and is focused on translational research seeking to find new treatments for the disease. More than $17 million appropriated in just three years.

This year, I will be attending the conference with my dad, who is now on the Board of Directors of the Arizona Chapter of the ALS Association, and I am excited to not only see familiar faces that continue to fight ALS together, but to spend some quality time with my dad.