Last week, Dr. Brian Wainger of Massachusetts General Hospital and Stephen Winthrop, Chairman of The ALS Association Board of Trustees, gave their unique clinical trial perspectives during the Northeast ALS Consortium (NEALS) webinar titled, “Retigabine Clinical Trial Update & Discussion with ALS Patient Advocate Stephen Winthrop.” For many years, The ALS Association has proudly partnered with NEALS to run ALS centered webinars to disseminate the most up-to-date information to the ALS community. Today’s post discusses the actively enrolling Retigabine clinical trial, which The ALS Association funds, as well as an honest perspective on what it is like to participate in ALS clinical trials.
All month, we are featuring stories of individuals who are having an impact in the fight against ALS.
Meet Shelly Hoover. Shelly is a wife, mother, grandmother, daughter, sister, friend, educator, Giants baseball fan, military veteran and ALS advocate. When you meet Shelly, there are two things that immediately become apparent, her joy for life and her passion for working to advocate for people with ALS. Her accomplishments are many. Since her diagnosis, she has volunteered, advocated and fundraised tirelessly. She and her family are why we fight for a cure!
Today, we are pleased to be joined by a wonderful ALS advocate Rob Robertson from Belleville, Ill. Rob proudly served our country in the U.S. Army for many years that included time in an elite fighting force “The Screaming Eagles.” He and his family faced many challenges over his lifetime, but nothing could have prepared him for his ALS diagnosis. Read his story and how he is bravely fighting ALS as an advocate, by raising money for research and teaching his fellow veterans and others about this devastating disease. Thank you for sharing your story Rob!
On May 14- 16 more than 600 advocates took part in a very successful National ALS Advocacy Conference here in Washington, DC. Of the 600 advocates, 130 were people living with ALS. On Sunday and Monday, national experts and officials briefed participants on The ALS Association priorities and other “hot topics” that they might encounter in their congressional meetings and Chapter Executives prepared their state delegations for Hill meetings.
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.
Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight. Stephen first joined the Association as a Trustee in 2015. He brings his expertise in fundraising, financial management, grant writing and information management services for non-profit organizations gained from a career in management consulting. He was diagnosed with ALS in November 2013 and immediately focused his energy on the fight against ALS. We are proud to be led by such a great leader and tireless ALS advocate.
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.
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