Former San Francisco 49ers receiver Dwight Clark, best known for his leaping catch in the end zone to help the 49ers win the 1982 NFC Championship game, announced on Sunday that he has ALS. Clark wrote a letter explaining his story, which you can read here. And here is a video of “The Catch.”
Many of us here at The ALS Association are enormous fans of SpongeBob SquarePants. It has brought joy to millions of children – and adults – for a long time. So we were saddened to learn that SpongeBob creator Stephen Hillenburg has ALS, as he said in a statement to Variety. Here’s his statement:
“I wanted people to hear directly from me that I have been diagnosed with ALS. Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”
You can read the Variety article here.
Our thoughts are with Stephen and his family. We are glad that SpongeBob will go on and look forward to someday finding out the secret formula in Krusty Krab’s delicious Krabby Patties…
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.
The ALS Association’s annual Leadership Conference earlier this month brought together leaders from all 39 chapters across the country in Irvine, Calif., to share ideas and collaborate. At this year’s conference, we were pleased to honor several heroes who are living with ALS and who have provided great inspiration to all those around them.
During The ALS Association’s annual Leadership Conference in Irvine, Calif., The Association came together to honor the Barnett family, who have contributed over $11 million to The ALS Association since it was founded. Lawrence Barnett was the founding chairman of The Association. To solidify the family’s place in Association history, it was announced that the TREAT ALSTM drug development program will be named “The Lawrence and Isabel Barnett Drug Development Program.”
Over the last year and a half, The ALS Association has been working with authors from Association Chapters, ALS centers and clinics and other ALS organizations to rewrite the original Living with ALS manual series, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers and other healthcare professionals, as well as our chapter and national staff.
Evy Reviers serves as the CEO of ALS Liga, our sister organization in Belgium and is a champion in ALS patient advocacy and care. She and her organization stepped up to partner with Dr. Desain and his team that develops NoiseTag brain computer interface (BCI), who won the ALS Assistive Technology Challenge in Dublin this past December. Through this collaboration, patients in Belgium will be able to try out the NoiseTag BCI to optimize its function and usability, thereby making it the best product possible. She sat down with us to give her perspective on ALS assistive technology and care from her vast experience as a leader of a successful ALS organization and from her personal experience as caregiving daughter of her father who lives with ALS.
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.”
After over a year in the making, the ALS Assistive Technology Challenge came to its culmination at the finale event during the ALS/MND International Alliance Meeting in Dublin. All five finalist teams came together to show off their prototypes to our esteemed judging team. The meeting participants living with ALS also had a chance to try out each new technology. Every finalist had an innovative idea – from brain computer interface technology to voice message banking – to help people living with ALS communicate with ease. This is extremely important to their quality of life and why the Challenge was started in the first place. Here is a photo summary of this exciting event, ending with the winners.