Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS.
Taking the time to understand the disease’s progression and make plans to deal with the physical impact can help ease the burdens faced by people living with ALS and their caregivers, helping them live longer, stronger, more independent lives.
Our ALS Certified Centers and clinics around the country are committed to doing whatever it takes to provide the best possible multidisciplinary care and support for people living with ALS and their families. Their dedicated teams of healthcare professionals are specially trained to address their patient’s needs, allowing them to receive care from each discipline during a single visit. Recently we caught up with Angel Preece, registered nurse and clinic coordinator at The Neuromuscular Center at Hospital for Special Care, ALS Center of Excellence, in New Britain, Connecticut and she shared what it is typically like to visit their clinic, interact with her team and receive collaborative care from numerous clinicians during one appointment.
We recently spoke with Nishal to learn more about him and his unique project focused on providing an assistive communication device for people with severe speech and motor impairment due to ALS using an intracortical Brain Computer Interface (iBCI).
As we continue to do whatever it takes to make ALS a livable disease, we are sharing some of the many resources we have available for the ALS community to help educate, inform and guide you through the ALS journey.
Thanks to the tireless efforts of ALS advocates across the country, the House included many of our aggressive requests for new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS.
The ALS Association and the U.S. Department of Veterans Affairs (VA) have entered into a partnership to help improve the lives of Veterans living with ALS by increasing the number of Veterans Health Administration (VHA) clinics that are designated as Certified Treatment Centers of Excellence and Recognized Treatment Centers.
In very powerful testimony, members of the ALS community asked members of Congress to ensure the FDA acts with greater speed and regulatory flexibility during a hearing before the House Energy and Commerce Health Subcommittee.
Across the country, teams of health care professionals specially trained to address the needs of people living with ALS are doing whatever it takes to provide the specialized care and support their patients require.
As part of this year’s National Advocacy Conference, Dr. Bryan Traynor, senior investigator and chief of neuromuscular diseases at the NIH’s National Institute on Aging presented a case study to the ALS community to help better understand what we know today and what we are working toward for the future relating to genetics and prevention. ALS prevention has not only been a priority for Traynor, but for the ALS community at large.
Dr. Lauren Gittings, whose award was made possible directly through funds provided by The ALS Association Oregon and SW Washington Chapter, is a postdoctoral fellow from the Sattler Lab at the Barrow Neurological Institute in Phoenix, Arizona. We recently spoke with Lauren to learn more about her and her unique project focused on identifying cellular and molecular changes that underlie cognitive impairment in ALS patients carrying the C9orf72 (C9) repeat expansion mutation.
We are pleased to share our 2021 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year. You will see that for all of the challenges of the pandemic, we have successfully maintained focus on mission delivery and innovation, pledging to do “whatever it takes” to bring us closer to a cure for ALS and to make ALS a livable disease.
The ALS Association’s Certified Treatment Centers of Excellence and Recognized Treatment Centers are dedicated to doing whatever it takes to provide compassionate care in a supportive, family-oriented atmosphere to help their patients live longer and stronger lives. One such center is the Phil Smith Neuroscience Institute at Holy Cross Health located in south Florida. “No matter what, the patient always comes first,” says Tina Duane, Regional Program Manager at The ALS Association Florida Chapter.
For nonprofit entities like The ALS Association, the filing of its Form 990 tax return is also an important tool to communicate the good stewardship and judicious financial management the Association has demonstrated while working toward its mission of creating a world without ALS.
We are on an urgent mission to make ALS a livable disease by 2030, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure.
After Bryan was diagnosed with ALS, the Stones immediately adopted the saying, “Today is the best day of the rest of our lives, and we’re going to make the most of it.” And in the days and years since, Bryan has done just that and is an awe-inspiring example of a true ALS hero living his life to the fullest.