Updated on 5/11/17: We did it! Thanks to your overwhelming support in petitioning Apple, Siri was updated in less than 24 hours. Now asking Siri, “What is ALS?” brings up the following definition:
“Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease and motor neuron disease (MND), is a specific disease that causes the death of neurons which control voluntary muscles.”
“What is ALS?”
This ALS Awareness Month, we want everyone to know the answer to that question.
Modern technology makes it easier than ever for people get information about ALS. Unfortunately, people cannot learn about the disease through Apple’s popular digital assistant, Siri. The voice recognition program is an integrated part of all current Apple products and Siri reaches a huge number of people. For example, there are more than 80 million iPhone users in the U.S. alone.
Continue reading Update: SUCCESS! Help Teach Siri About ALS Awareness
The ALS Association today announced the election of Stephen Winthrop as Chair of The ALS Association Board of Trustees. Stephen was diagnosed with ALS in 2013 and joined the Board in 2015. He replaces Doug Butcher, who will remain a member of the Board.
“The coming months and years will be transformational for the fight against this dreadful disease, and I am honored to have been chosen to lead our Board of Trustees during such an exciting yet challenging time,” said Winthrop. “After a career in political, corporate, and nonprofit consulting, my current battle with ALS made a commitment to The ALS Association a natural choice.”
Winthrop was born in New York City, but has spent most of his life in Massachusetts. After graduating from Harvard College, Cum Laude in Government, he spent a few years working for a political polling firm before attending graduate school. Winthrop received an M.B.A. from the Wharton School at the University of Pennsylvania and an M.A. from the Johns Hopkins School of Advanced International Studies. He spent three years working for a large management consulting firm in Washington, D.C., before starting his own consulting practice, specializing in providing financial management, fundraising, grant writing and information management services to small-to-mid-sized non-profit organizations.
“The Association and the entire community are very lucky to have Stephen in this leadership position,” said Barb Newhouse, President and CEO of The ALS Association. “His extensive background will undoubtedly serve him well in this new role and his experience with ALS will continue to inform and impact how our Association views and fights this disease.”
Since the late 1990s, his work with non-profits has been on a volunteer basis, balanced by a desire to be actively involved in parenting and a growing involvement in managing the finances of a number of family-related endeavors. Stephen and his wife, Jane, live outside of Boston with their two teenage daughters.
Last month, Dr. Leonard Petrucelli at Mayo Clinic Jacksonville in Florida and colleagues reported discovering a new ALS biomarker that specifically detects a protein made by the C9orf72 expansion, the most common inherited cause of ALS. Their results are crucial to complement an upcoming clinical trial testing antisense drugs targeting the C9orf72 expansion. The ALS Association supported this study, including funding to bright, young scientists that significantly contributed to this project – past and current Milton Safenowitz Postdoctoral Fellows, Drs. Tania Gendron, Marka van Blitterswijk, Veronique Belzil, Mercedes Prudencio from the Mayo Clinic Jacksonville and Clinical Research Fellow, Dr. Lindsey Hayes from Johns Hopkins University. The paper with Drs. Tania Gendron, Jeannie Chew, Jeannette Stankowski and Lindsey Hayes as co-first authors, along with 78 contributing researchers, was featured on the Science Translational Medicine front cover of the March 29th issue, which is a great scientific honor.
Continue reading New C9orf72 Biomarker Shows Promise
By Dr. Richard Bedlack
The CReATe Consortium is an ALS Association supported strategic initiative dedicated to the discovery and validation of ALS biomarkers and understanding the relationship between the clinical presentation and genetic background of people living with ALS. Biomarkers are essential for carrying out efficient ALS clinical trials and improving diagnosis time. Here, Dr. Bedlack, CReATe Outreach and Advocacy Director, shares how CReATe is making an impact on discovering effective treatments for motor neuron diseases that includes ALS.
Continue reading Networking to Find Better Treatments for Motor Neuron Diseases
Earlier this month, The ALS Association was happy to travel to Dublin to participate in the 27th International Symposium on ALS/MND. The Symposium, the largest ever, brought together top ALS researchers and clinicians from all over the world. People in attendance, including those from The ALS Association, used the hashtag #alssymp during the event. Here are some of our favorites!
Continue reading Hopeful Highlights from the Recent ALS MND Symposium
Our friend Ted Harada passed away this week.
Many of you may have known him. Ted was first diagnosed with ALS in August 2010 and immediately became a tireless advocate, volunteer, and voice of the ALS community.
He had served on The ALS Association Board of Trustees and on the board of directors for the Georgia Chapter, devoting precious hours of his life to steering our Association in the right direction.
Continue reading Our friend Ted
[UPDATED AUGUST 25] We’ve updated this post with more of the #EveryDropAddsUp stories you’ve submitted!
The ALS Ice Bucket Challenge showed us that when small things add up, they can make the impossible happen. As part of our #EveryDropAddsUp campaign, we’re asking YOU to share what things add up to make a difference in your life. Below are some of the responses we’ve received so far. If you’d like to submit your own “Every _____” story, take a look at our Submission Guidelines or leave your response in the comments section!
Continue reading Every ____ Adds Up: Your Responses