Sheila Essey Award Winner Profile: Dr. John Ravits Offers a Continuum of Care

Dr. John Ravits, Professor of Clinical Neurosciences and Head of the ALS Translational Research Program at the University of California, San Diego (UCSD) is a physician-scientist at the forefront of ALS thought and research of sporadic and familial ALS. Yesterday, at the 69th Annual American Academy of Neurology (AAN) Meeting in Boston, he was presented the prestigious 2017 Sheila Essey Award by Dick Essey, founder of the award named in honor of his wife Sheila who battled with ALS for ten years and died from the disease in 2004.

Over the course of his career, Dr. Ravits has emerged from the clinics where he cared for thousands of patients to formulate specific ideas about onset and progression of ALS and to take these ideas to create idealized models. His basic science research interests and contributions to science are far reaching from understanding the onset and progression of ALS in the body to exploring ALS neuropathology to functional genomics in motor neurons and more. Dr. Ravits also played an integral part in antisense oligonucleotide (ASO) therapy development for the most common genetic cause of ALS, the repeat expansion of the C9orf72 gene.

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Care Connection – Easing Stress on ALS Families

Families living with ALS are faced with a whole host of everyday challenges that can become a burden over time. The ALS Association created the Care Connection program to provide support to meet families’ needs to ultimately alleviate stress. Learn more about this extraordinary program and all the help it delivers.

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PREVIEW: 2017 National ALS Advocacy Conference – Register Now

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.

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ABC Affiliate in Boston Airs “Unlocking ALS” Special

 

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.

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San Francisco 49ers Legend Dwight Clark Announces He Has ALS

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.”

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SpongeBob SquarePants Creator Stephen Hillenburg Announces He Has ALS

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…

Legislative Update – Social Security Disability Insurance for People Living with ALS

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.

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