We had the pleasure of joining ALS scientists, clinicians, health care professionals, industry and advocacy partners, and, most importantly, people with ALS and their families at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association last month. It’s always a great opportunity to come together and learn from each other.
Here are some highlights from the three events – the Annual Alliance Meeting, the Allied Professionals Forum, and the International Symposium on ALS/MND – which were held in Glasgow, Scotland (UK), December 4-9.
Continue reading Collaboration and Hope in Glasgow: A Look Back at the Annual ALS/MND Meetings and Research Symposium
People living with ALS come first in everything we do. We’re dedicated to providing people fighting ALS and their families and friends with the critical information, support, and resources they need to live full lives and better meet daily challenges.
Our chapters help people living with ALS and their families across the country through our equipment loan closets, support groups, augmentative communication and assistive technology program, caregiver support, and education and outreach.
We also collaborate with the best ALS physicians and clinics in our service areas to help ensure that people living with ALS have access to specialized multidisciplinary care.
Here are just a few ways we provided critical assistance to those living with ALS and their families in 2018:
- More than $4 million in grants were provided through our Certified Center Program
- Nearly 9,000 people were served specifically through our Certified Treatment Centers of Excellence and Recognized Treatment Centers
- More than 2,400 veterans received assistance through our nationwide chapter network
Check out our latest infographic to discover all the ways we made a difference to the more than 20,000 people with ALS we served this year. (You can also view the infographic on our website here.) These efforts are essential in improving the quality of life for people fighting ALS.
We need your help TODAY to continue to provide the best care across the country. Your tax-deductible gift will allow us to continue these crucial services into 2019. We can’t do it without you!
Thank you for your support – for giving hope and making an impact on the lives of people affected by ALS.
The ALS Association is ramping up its efforts to make sure people with ALS who rely on Medicare have access to home health care benefits.
“Many people in the community, including people with ALS, people within our chapters, and our clinical partners, have told us about the serious and persistent challenges faced by Medicare beneficiaries with ALS,” said Dr. Neil Thakur, executive vice president for mission strategy at The ALS Association. “Many such beneficiaries, despite being fully qualified, are turned down for the home health benefits they deserve. Other beneficiaries are able to receive Medicare home health but deal with inadequate hours of service and inappropriate termination from care.”
Continue reading People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve
Mitsubishi Tanabe Pharma America (MTPA) will present initial data on efforts to create an oral version of edaravone, a key drug in the treatment of ALS that is currently only available intravenously, during the International Symposium on ALS/MND in Glasgow, Scotland. The symposium will be held Dec. 7-9. MTPA is expected to present results that demonstrate that oral edaravone is processed in the body in the same manner as the infused formulation.
An intravenous formulation of edaravone, Radicava, was approved by the U.S. Food and Drug Administration to treat ALS in May 2017.
“We are happy to learn that MTPA is working on an oral formulation of Radicava. This new formulation could make it easier for people living with ALS to take the drug. As we learn more, we will be sure to update our community,” stated Dr. Neil Thakur, executive vice president of mission strategy at The ALS Association.
Continue reading Mitsubishi Tanabe Pharma America to Present Data Showing Oral Version of Edaravone Processed Similarly to IV Version in Patients
By Russell Mikunda
Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.
I was in the Navy for eight years, reporting for duty on three different ships during my time in the service. During my second deployment, we were off the coast of Beirut when things started to heat up during the early 1980s.
I’m very proud to be a veteran. The VA (Department of Veterans Affairs) takes good care of me. But sometimes I worry that everybody with ALS doesn’t get that same high level of treatment I do.
Continue reading Guest Post: ‘I Would Still Serve My Country’
Our national network of 63 Certified Treatment Centers of Excellence (CTCEs) provides robust, expert multidisciplinary ALS care and services in a supportive atmosphere, emphasizing hope and quality of life. Studies show attending a multidisciplinary clinic can extend survival, increase quality of life, and improve access to potential therapies.
CTCEs bring 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.
Teams typically include a neurologist, a physical therapist, an occupational therapist, a respiratory therapist, a nurse, a dietitian, a speech-language pathologist, a social worker, a mental health professional, and a liaison from The ALS Association.
Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one. This is the third in an ongoing series of CTCE spotlights.
Continue reading Certified Treatment Center of Excellence Spotlight: ALS Treatment and Research Center at UCSF
Yesterday, ITF Pharma, Inc. announced that Tiglutik™, the first and only thickened liquid form of riluzole, was approved by the FDA for the treatment of ALS. This formulation contrasts with the oral pill form of riluzole that has been on the market for ALS for more than 20 years.
This thickened liquid form of riluzole should help individuals with swallowing difficulties. Approximately, 80 percent of people with ALS develop difficulty swallowing because of gradual weakness and paralysis in the muscles of the face and throat, called bulbar muscles.
In ALS, muscle weakness in the face and throat can lead to swallowing issues called dysphagia, along with problems with chewing, salivation, talking, and drinking. This often results in unwanted weight loss, issues taking oral medications, and in some cases, choking and aspiration, which is when food or liquid go down the wrong tube and into the lungs.
To counteract difficulties swallowing, many people with ALS end up crushing their pills. When medication is not taken as prescribed, its effect may decrease. Tiglutik provides an alternative as a thickened liquid, which can be administered orally twice-daily via a syringe. Its most common side effects are in line with established side effects observed in oral riluzole.
Continue reading Tiglutik – Thickened Liquid Riluzole – Receives FDA Approval to Treat ALS