A major goal of The ALS Association is to improve the quality of life of people living with ALS, their family and caregivers and to actively engage them in the process of finding relevant therapies and cures.
The Association recognizes the importance of improving clinical and psychosocial management of ALS and helps to accomplish this through clinical management grants. Studies funded by The Association include, but are not limited to, projects addressing gaps in the delivery of care, exploring and developing telemedicine practices, addressing the needs of caregivers, studying nutritional and respiratory approaches, addressing activities of daily living, alternative treatments, and exploring psychological interventions to address stresses of living with ALS.
In order to show the additional value of a new therapy, all participants should start by receiving the best quality of care available, underscoring the need to establish and continually improve the standard of care for people who already live with ALS.
ALS Association Certified Centers of Excellence (in red) cover many highly populated areas in the United States.
The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on established standards of care and best practices through the American Academy of Neurology and research. The ALS Association’s Certified Treatment Centers of Excellence and Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere. Currently, we have 50 Certified Treatment Centers of Excellence and 65 Recognized Treatment Centers and affiliated clinics across the country. We are continually working to increase those numbers to provide outstanding care in all corners of the United States.
Actively participating in ALS research is an essential requirement to becoming an ALS Association Certified Treatment Center of Excellence. Chapters and clinics are important advocates for patient involvement in clinical trials, which is the only way a treatment will make it to market. Additionally, clinics can engage people living with ALS in providing biological samples to also help further research efforts.
This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison. They ensure every patient’s need is cared for, while providing comfort and support.
People living with ALS typically visit the clinic every three months, so chapters provide a critical bridge between visits, ensuring that needs are met and resources are provided in order to ensure the very best quality of life.
We have also partnered with another nonprofit organization, Prize4Life, to offer an ALS Assistive Technology Challenge program that is designed to make a direct impact on people living with ALS through enhancing technologies for communication. Its aim is to develop flexible, accessible technology to help people with ALS communicate with ease.
Ensuring that people with ALS and their caregivers are well-informed about ongoing ALS research and clinical trials is extremely important. Education not only provides a better understanding of what is happening to them physically and how researchers are working to help them, but it also inspires them to become more involved in ALS clinical studies and trials. For example, we support ALSUntangled, founded by Dr. Richard Bedlack, which is a web portal dedicated to investigating and reporting on alternative and off-label ALS treatments. We also support the Clinical Research Learning Institute of the Northeast ALS Consortium (NEALS), an annual two-day program devoted to educating attendees on clinical research and therapy development and empowering this group to be advocates for ALS clinical research. The Association also is a partner with NEALS to run a clinical trials website to provide people with the most accurate, up-to-date information regarding clinical trials. A clinical trial liaison is available by phone or email to answer any questions regarding trials and provide assistance locating trials nearby. See below for contact information.
To contact Clinical Trial Liaison:
Email: alstrials@partners.org
Phone: 877-458-0631