Since Mark’s diagnosis in 2000, he has been committed to the fight against ALS on many levels. Over the past 21 years, he has advocated locally at the state level and nationally on Capitol Hill. He’s volunteered at innumerous events with The ALS Association Mid-America Chapter and served on the Chapter’s board and Services Committee. All who know him say his ALS diagnosis does not define him, instead it motivates him to do more and to give hope to others.
Peter Sawyer of Mechanicsburg, PA is a military veteran and has been living with ALS for five years. He and his wife and caregiver, Lura, are tireless advocates for The ALS Association’s mission and exemplify true ALS heroes.
In 2016, Troy Fields had everything going for him. A beautiful and growing family. A highly successful and satisfying career that allowed him to travel internationally. But he also started to notice signs that something wasn’t quite right. After treatment for cancer and a battery of other tests, his ALS diagnosis was eventually confirmed. Instead of focusing on what he was going to lose, Troy opted to channel his energies to be an agent of change for the ALS community.
“Shortly after being diagnosed, I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”
Voting safely during a pandemic is challenging enough, but what do you do if you're high risk for contracting the coronavirus and facing mobility and motor function challenges? While the 2020 election is now just days away, it’s more important than ever to understand your rights, the voting options available in your state, and make your plan to share your voice.
With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?
On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.
At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.
The ALS community recently presented its recommendations to the U.S. Food and Drug Administration (FDA) regarding the Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry at a day-long event, called ALS Community Workshop: Therapy Development and Regulatory Pathways, which was held in Washington, D.C., on July 12. Over 90 people attended in person, with many more tuning in online.
Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving SSDI benefits. Every patient must wait regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.
Late last month, Congress passed a $1.3 trillion fiscal year 2018 Consolidated Appropriations spending bill that included a $3 billion increase to funding for medical research to the National Institutes of Health (NIH). Funding to the NIH has increased to $37 billion, the largest bump they have seen in years.