The Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC) is a prominent player in ALS genetics, leading the way in ALS gene discovery. We are proud to report on its many successes in ALS genetics that were made possible by our major funding efforts. With donations raised by the ALS Ice Bucket Challenge, The ALS Association made a $2.5 million commitment to NYGC CGND in partnership with the Greater New York Chapter, which was matched by a gift from the Tow Foundation. They are proud to collaborate with many of the large, global strategic initiatives that we also support, including Project MinE and Genomic Translation for ALS Care (GTAC) Consortium, and partner with, including Answer ALS and Target ALS. In part I of the NYGC progress update, today’s guest blogger, Dr. Hemali Phatnani, Director of the CGND, reports on the many great achievements out of the NYGC CGND accomplished through their collaborative research approach.
All month, we are featuring stories of individuals who are having an impact in the fight against ALS.
Meet Tim Ritter from Myrtle Beach, S.C. Tim is a husband, father, Navy veteran, professor and a person living with ALS. We recently sat down with Tim to learn about the most impactful moments in his life that has defined who he is today.
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.
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.
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.
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!