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.
Donate today to support the fight against ALS.
By: Our Colleagues at ATSDR
One of the questions that people living with ALS often ask is – what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry (Registry) – in the newly launched National ALS Biorepository (Biorepository).
The Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Biorepository as a part of the Registry in January 2017. This launch came after a pilot study that showed it was feasible to include a biorepository. The Biorepository is collecting biological samples from persons with ALS. It’s different from other biorepositories because it does not limit who can take part to a specific area, study, or clinic. This means that participants’ samples may help researchers everywhere work toward better understanding the causes of, and possible treatments for ALS.
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.