In preparation for this week’s ALS Association Advocacy Fly-In in Washington D.C., we are giving a preview of our 2017 legislative priorities. Here we focus on the ALS Disability Insurance Access Act, which was introduced last week in the Senate and United States House of Representatives (S.379/H.R.1171). Its goal is to eliminate the five-month waiting period that people living with ALS must complete prior to receiving Social Security Disability Insurance (SSDI). The Association whole-heartedly supports this legislation and its goals and is acting aggressively to make this legislation into a reality.
In January, CEO and President Barb Newhouse hosted a Listening Tour with Association staff leaders, BOT Chairman Doug Butcher and Bill Thoet, former BOT Chairman and current Chairman of The Association’s Research Committee.
Former Tennessee Titans linebacker Tim Shaw’s unexpected diagnosis of ALS doesn’t stop him from finding hope and advocating on behalf of those faced with ALS. He has also been an incredible ally of The ALS Association in fighting this disease. Below, we’ve included a Q/A with Tim, which includes information about his new book, “Blitz Your Life.” The story, according to its author, is about “overcoming fear and living life with a purpose.”
When I was diagnosed with ALS, I was hoping to see my sons graduate from high school. As it turns out, I’ve been blessed to have seen them graduate from high school and college.
I know I’m one of the lucky ones. ALS has progressed fairly slowly in me and I don’t take that for granted. From day one of learning I have this disease, I’ve done what I can to advance ALS research and the discovery of new treatments.
All of us living with ALS have to have hope: hope for a treatment and hope for a cure. That’s why I’m excited about a new report that came out today from the Pharmaceutical Research and Manufacturers of America (PhRMA) and The ALS Association, “Medicines in Development for Rare Diseases.”
This new report, which also shares my story, finds that America’s biopharmaceutical research companies are currently developing more than 560 medicines for patients with rare diseases, 38 of which are for people with neurological disorders, including ALS.
Among the new therapies in development for ALS is antisense technology against SOD1. Antisense technology is an important step toward helping patients and their families manage ALS and something The ALS Association has supported since 2003.
There are about 7,000 known rare diseases that affect fewer than 200,000 people in the U.S. every year. This report gives me hope that industry is focusing on these diseases, including ALS, more than ever before.
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association’s Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.
The ALS Association’s goal in sharing this information here is, through Barbara’s story to 1) show how one family was able to successfully negotiate with their HMO for in-home care payments, and 2) share experiences of caregiving and effective coping strategies – validation of common feelings.
It should be emphasized that this tells the experiences of one individual at a certain time in her life. Certainly, not all people will have the same situations and experiences that Barbara shares and not everyone will and/or would develop the same opinions that Barbara has.
Excerpts from Barbara Dickinson’s messages
“My name is Barbara Dickinson. I’m the trustee of The ALS Association Rhode Island Chapter and also a national trustee of The ALS Association. I got involved with ALS because my husband was diagnosed nine years ago with the disease. We made some decisions in the course of his disease that has allowed him to have a quality of life that I would hope more patients with ALS would be able to achieve, and that’s what I want to talk to you about today.