More than 500 people have already registered for the 2017 National ALS Advocacy Conference and time is running out to sign up. This conference is an annual opportunity for our advocates – people living with ALS, their families, friends, doctors and researchers – to share the ALS story and let Members of Congress know the true nature of the disease and why it is important to take action immediately.
Last night, WCVB, the Boston ABC affiliate, featured a half-hour show called “Unlocking ALS,” highlighting all the great work coming out of the Boston area in the fight against ALS. The show did a wonderful job covering all the progress that has occurred since the ALS Ice Bucket Challenge (ALS IBC), an organic online movement that catapulted ALS into the spotlight while raising $220 million worldwide. From the ALS IBC, The ALS Association received $115 million dollars, of which over $77 million has been dedicated to research. Peter Frates and his family were and continue to be instrumental in advancing this important movement.
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…
Rivals Honor former ODU Coach Jeff Capel, Jr., Recently Diagnosed with ALS
The men’s basketball coaching staffs of Duke University and the University of North Carolina are wearing ALS Association lapel pins tonight in honor of Jeff Capel, Jr., who was recently diagnosed with ALS. Capel was the head coach at Old Dominion University for seven seasons and also served as an assistant for the Charlotte Bobcats and the Philadelphia 76ers. His son, Jeff, is an assistant on Duke’s staff, and his son, Jason, played at UNC and now is an announcer on the ACC Network.