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ALS Association
Suzanne Schrag, Senior Director of Care Services and ALS Clinic Liaison
Each member of the team at an ALS multidisciplinary clinic plays an important role in delivering critical care for people living with ALS and their families. Association-wide liaisons work closely with ALS clinics nationwide, ensuring each patient’s unique needs and wishes are being addressed throughout their journey living with ALS. We recently spoke with Suzanne Schrag, senior director of care services for The ALS Association Rocky Mountain Chapter, and clinic liaison to ALS multidisciplinary clinics across Colorado and Utah.
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ALS Association
Wil Armstrong: Riding Against the Wind to Fight ALS
Since high school, twenty-two-year-old Wil Armstrong dreamed of cycling across the country. After witnessing the impact of ALS on Rodney Lapp, his former mentor and high school basketball coach, Wil found his purpose to make this dream a reality.
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ALS Association
AAN Accepting Public Comments on Updated ALS Quality Measurement Set
The American Academy of Neurology ALS quality measures provide guidance and recommendations to health care providers, to ensure the most current information is available to provide the highest standard of care for individuals living with ALS. AAN has published draft updates to the ALS Quality Measurement Set and is now accepting public comments to help inform the final updates.
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ALS Association
Meet Dr. John Novak, Neurologist and ALS Clinic Medical Director
While there are many moving parts within an ALS multidisciplinary clinic, each team member plays an important role in delivering critical care for people living with ALS and their families. The leader of the team is the medical director, providing the professional guidance and support necessary to meet the unique needs of each patient throughout their journey living with ALS.
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ALS Association
Extending Survival for People Living with ALS
The 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 they need during a single visit. The ALS Association collaborates with experienced ALS clinicians across the country to help ensure people living with ALS have access to this type of specialized care.
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ALS Association
ICYMI: The ALS Association’s Top Ten Blogs of 2021
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.
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ALS Association
Doing Whatever it Takes to Deliver Hope and Impact
The work detailed in this report covers the entirety of our mission to create a world without ALS, from expanding the research pipeline, to working to bring the best care possible to people living with ALS and their caregivers to fighting for increased federal funding for ALS research and public policies that improve the quality of life for people living with ALS.
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ALS Association
My Dad and Our Life with ALS
My parents had been married less than two years when my dad was diagnosed. Of course, making a decision regarding whether or not to start a family was difficult at the time, but due to their faith and positive outlook, they chose to do so. Had they not shared the same optimism, my older brother John would not be here, and I would not be writing this today. To say that I am thankful for their decision is an understatement. My dad has had a long battle with ALS and is still fighting after 26 years.
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ALS Association
Researcher Spotlight: Yuka Koike, Ph.D.
We talked with Dr. Yuka Koike, postdoctoral fellow working under her mentor, Dr. Leonard Petrucelli in the Petrucelli lab at Mayo Clinic Jacksonville, to learn more about her and her ALS research focused on revealing how TDP-43 mediated RNA dysfunction contributes to ALS/FTD disease.
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Greater Chicago Chapter / ALS Association
ALS Family of Faith: One Man’s Spiritual Journey Living With ALS
Steve realized he needed to turn to his faith to help him live with ALS. Steve assembled a team and got to work developing ALS Family of Faith, a new ministry designed to meet the needs of those looking for prayer and spiritual counseling during their journey with ALS.
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ALS Association
PRO-ACT Database Wins Healey Center International Prize for Innovation in ALS
The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database recently received the Healey Center International Prize for Innovation in ALS, a $50,000 prize. The database is the largest collection of ALS clinical trial data and includes de-identified records of 11,000 patients from 23 clinical trials.
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ALS Association
ACT for ALS Passes After Heroic Efforts of ALS Advocates
Thanks to the hard work of ALS advocates, Congress has passed the Accelerating Access to Critical Therapies (ACT) for ALS Act after a unanimous vote in the Senate. The bill previously passed in the House 423-2. The bill is expected to be signed into law by President Biden.
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ALS Association
ALS Focus Results Show Benefits to Telehealth Access
People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.
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ALS Association
ALS Association-Funded Research Shows Link Between Football and ALS
Research funded by The ALS Association has found that NFL players are four times more likely to be diagnosed with ALS and die from the disease than people who never played in the league, adding to the mounting evidence of a link between playing football and ALS.
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ALS Association
Researcher Spotlight: Janani Parameswaran, Ph.D.
We talked with Dr. Janani Parameswaran, postdoctoral fellow from Dr. Jie Jiang’s lab at Emory University in Atlanta, to learn more about her and her ALS research focused on unraveling the underlying disease mechanism.
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ALS Association
Roles Redefined: ALS as Advocate and Teacher
Dr. Heidi Tarr Henson, recently diagnosed with ALS, reflects on in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.
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ALS Association
Enjoying the Holidays, One Delicious Meal at a Time
Holiday celebrations are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families. Learn tips to help enjoy the holidays and delicious easy chew, easy swallow recipes the whole family will enjoy.
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ALS Association
Sharing Advice for My Fellow ALS Caregivers
My husband’s ALS journey is not unique. It started with weakness in his left leg, and a few other puzzling issues which he began to note around 2010. We didn’t do anything about it until October 2012, when things got more puzzling.
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