Last week, President Trump submitted his budget request to Congress. Included in the proposal are changes to funding for Medicaid, cuts to Social Security Disability Insurance (SSDI), cuts to the National Institutes of Health (NIH) and the complete defunding of the National ALS Registry at the Centers for Disease Control (CDC). The ALS Association is very concerned that these proposals will negatively impact people affected by ALS and will slow down the progress we have made in research for treatments and a cure. We do not believe this is a partisan issue – Members of Congress on both sides of the aisle have expressed concerns about the cuts contained in the President’s budget.
There are many ways, both big and small, to raise ALS awareness. Some people have used their filmmaking or public speaking talents to craft compelling stories of those living with this disease. From TED talks to award-winning documentaries, these videos inspire, educate, challenge and entertain viewers, while celebrating the lives of people with ALS and the contributions they have made.
Thank you to the over 600 people that descended on Capitol Hill on Tuesday during The ALS Association’s 2017 Advocacy Conference. So many advocates shared their stories to inspire their local legislators to support important ALS initiatives. Of those in attendance, 286 people were first time participants. Nearly every state in the country was represented, and most importantly, 128 people living with ALS made the trip to Washington, DC. Over 400 legislative offices were visited on both sides of the aisle.
Photo Highlights from a Day on the Hill:
Karolina Phelan and her two beautiful daughters Emma and Sophia from the Greater Philadelphia Chapter lost their husband and father to ALS. Hear from this special family sharing their story with Congresswoman Bonnie Watson Coleman.
Donate today to support the fight against ALS.
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.
ALS is a devastating disease with no cure.
But researchers are working to change that. The increased awareness and donations provided by events like the ALS Ice Bucket Challenge—and by people like you—are making a real difference in the pace of discoveries, bringing us ever closer to the end of ALS.
May is ALS Awareness Month!
Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.
But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:
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.