Stephen Winthrop, Who Has ALS, Elected Chair of ALS Association Board of Trustees

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.

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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Featured Scientist: Dr. Nicholas Olney – Exploring new techniques for early detection

Today, we are happy to feature Dr. Nicholas Olney, this year’s recipient of the prestigious Clinical Research Training Fellowship in ALS Research Award given in partnership with the American Academy of Neurology (AAN). Dr. Olney is currently working on an ALS biomarker project aimed at developing clinical markers of disease progression, a major unmet need in ALS, at the University of California at San Francisco (UCSF) School of Medicine under the mentorship of Drs. Howard Rosen, Cathy Lomen-Hoerth and Bruce Miller.

Receiving this award is particularly poignant for Dr. Olney. His father, Richard K. Olney, M.D., was an internationally respected neurologist and researcher, who founded the ALS Treatment and Research Center at the University of California, San Francisco (UCSF), an ALS Association Certified Center of Excellence and served on the Board of Directors for The ALS Association Golden West Chapter. Dr. Olney was himself diagnosed with ALS in 2004, the same disease he helped his patients fight for over 30 years, and lost his battle in 2012. That same year, The AAN and The Association launched the Clinician Scientist Development Award and named the award in his honor.

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New C9orf72 Biomarker Shows Promise

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.

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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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Misfolded SOD1 is not a primary component of sporadic ALS

Today, we welcome a guest scientist blogger, Dr. Sandrine Da Cruz from University of California San Diego (UCSD).  She, along with her colleagues, just published an important paper that looks into how SOD1 misfolding, the second most common inherited cause of ALS, impacts sporadic ALS (SALS). A huge percentage of ALS cases – approximately 90% are sporadic – meaning we do not know the cause. It is extremely important to understand more about this population of people living with ALS. The ALS Association is proud to support Dr. Da Cruz’s work. She is a past awardee of our Milton Safenowitz Postdoctoral Fellowship and is now an Assistant Investigator the Ludwig Institute at UCSD.

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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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