Telemedicine With a Twist Serves More People in Rural Areas

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

People living with ALS and their families need a great number of care services. We use innovative technology and partnerships to help fill the gaps in care for underserved populations and connect people with ALS to opportunities for greater quality of life.

Our Mid-America Chapter has developed a program that takes access to care a step further, while also incorporating research elements.

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Dr. Marka Van Blitterswijk: ALS Researcher Focused on Discovering Biomarkers for the C9orf72 Gene Mutation

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Dr. Marka Van Blitterswijk from the Mayo Clinic Jacksonville is a scientist and one of our former Milton Safenowitz postdoctoral fellows. Since moving on from the program, she has established her own ALS lab as an assistant professor. We recently awarded her a prestigious multi-year grant surrounding her biomarker work.

Today, we sit down with Dr. Van Blitterswijk to hear about her latest work in ALS biomarkers, focused on the most common gene mutation in ALS, called C9orf72. We are thrilled to see her career and ALS research efforts thrive.

Continue reading Dr. Marka Van Blitterswijk: ALS Researcher Focused on Discovering Biomarkers for the C9orf72 Gene Mutation

Guest Post: Steven’s Stompers and Bladen County Aim for a Cure for ALS

By Ann Mason, Cousin and Steven’s Stompers Team Member

The story of Steven’s Stompers begins with Steven Davis.

Steven is a lifelong resident of Bladen County, N.C., an avid outdoorsman, a pipe fitter by trade, and an outstanding athlete. He began noticing symptoms in February 2012 and was diagnosed with ALS by a neurologist on April 30, 2012, at age 34.

Six years after his diagnosis, Steven’s physical abilities have been severely limited by the disease’s progression. He is now confined to a wheelchair and depends on assistance for all daily activities.

He moved back into his childhood home so his parents, Kenneth and Gail Davis, and his sister, Sandra Robbins, could be his primary caregivers. (Valuable caregiving support comes from the staff at Lower Cape Fear Hospice.)

In 2013, Sandra initiated Steven’s Stompers in honor of Steven to raise awareness and funds for The ALS Association North Carolina Chapter through the Fayetteville Walk to Defeat ALS. Family and countless others touched by the effects of ALS joined the Steven’s Stompers team.

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Milton Safenowitz Postdoctoral Fellows Come Together to Share Innovative Ideas

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

The ALS Association is proud to have supported the development of bright, young scientists through the Milton Safenowitz Postdoctoral Fellowship program since 2004. The Safenowitz family, through our Greater New York Chapter, founded the program in memory of Milton Safenowitz, who died of ALS in 1998.

On June 21, our newest class of Milton Safenowitz Postdoctoral Fellowship awardees came together for a bi-annual symposium in New York City. The fellows were joined by four established researchers –Dr. Sandrine DaCruz from University of California San Diego, Dr. Tania Gendron from the Mayo Clinic Jacksonville, Dr. Timothy Miller from Washington University St. Louis, and Dr. Hemali Phatnani from the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center – who gave advice on each fellow’s work.

Dr. DaCruz and Dr. Gendron are former Milton Safenowitz fellows who are now highly regarded ALS researchers running their own ALS labs.

Dr. Timothy Miller was the keynote speaker at the luncheon. He gave an overview of his work in ALS genetics and biomarkers (a substance you can measure in the body that changes over time).

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2018 marks the 20th anniversary year of Milton’s passing, and we were honored to be joined by the Safenowitz family to mark the occasion. Marilyn Safenowitz, Milton’s wife and matriarch of the family, which now includes nine grandchildren and one great-grandchild, proudly handed out the fellowship awards to our new class during the luncheon.

And Ryan Levine, Milton’s grandson, gave a moving speech about his grandfather, describing him as a person who “people should emulate because of the empathy and love that he exuded and his dedication to help others.”

Milton Safenowitz Group Shot

The ALS Association provides the only postdoctoral fellowship program specifically tailored toward supporting first-year postdoctoral fellows in the ALS field, made possible by the generous support of the Safenowitz family and donors across the globe, including support from many of our chapters and the ALS Ride For Life.

The Association understands that attracting bright, young scientists to enter and then remain in ALS research is essential to moving the field forward. Our Milton Safenowitz Postdoctoral Fellowship awards were created specifically to encourage and facilitate promising new scientists to enter the ALS field.

The pathway for a postdoctoral fellow to attain their own laboratory at an academic institution is long and difficult. According to the journal Nature, people remain a postdoc for as many as five years with a relatively low salary, and many fellows become discouraged by the prospect of life in academia and, instead, take positions in industry or abandon careers in research altogether.

The ALS Association is committed to turning the tables on these statistics. Through mentorship and resources provided by our Milton Safenowitz Postdoctoral Fellowship program, over 90 percent of award recipients finish their fellowships and start their own ALS laboratories.

That means the program not only increases the pool of bright young researchers in the fight against ALS, but also balloons the number and quality of innovative ideas across the research pipeline.

Since its founding, the program has proudly sponsored 64 postdoctoral fellows have published over 167 publications in top journals. All of our fellows are and have been regular presenters at major scientific meetings.

Our Milton Safenowitz Postdoctoral Fellowship program gives young scientists the opportunity to obtain invaluable experience through the development of high-quality papers, collection of data, and support of applications for further funding from the Association, the National Institutes of Health, and other sources.

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Safenowitz fellows come into the laboratory with innovative ideas that give fresh perspectives on ongoing work. Funding from The ALS Association allows Safenowitz fellow to effectively test those ideas to produce brilliant work and publications in top scientific journals.

Safenowitz fellows also leverage funding from the Association to establish their own ALS research laboratories, where they continue to move their ideas toward potential treatments, as well as mentor other bright, young ALS researchers.

Our fellowships also provide fundamental mentorship to young scientists through relationships with their own mentors and partnerships with other ALS researchers.

Donate now to help us support more innovative, collaborative work to help advance research and care for people living with ALS and their families.

Don’t miss out on doubling your impact! This is a critical time to donate since our corporate partner, Biohaven Pharmaceuticals, is matching all gifts up to a total of $25,000! Biohaven is committed to supporting innovation to help improve the lives of all people impacted by ALS.

To learn more about Biohaven’s commitment to advances in ALS and other neurological diseases, click here.

Collaboration is at Our Core…and Spurring Innovation Along the Way

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Since our founding in 1985, we have put collaboration at the forefront of everything we do. The gift of the ALS Ice Bucket Challenge in August 2014 gave us the unique opportunity to up our game in establishing innovative research partnerships around the world.

We continue to foster those partnerships throughout the ALS community today. Our partnerships span to all areas, from academic institutions and researchers, to industry (biotech and pharmaceutical) partners, to government organizations, to other nonprofit organizations.

Continue reading Collaboration is at Our Core…and Spurring Innovation Along the Way

Oregon Chapter Goes the Extra Mile to Give People With ALS a Voice

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Have you ever been frustrated by not being able to get your point across?

People living with ALS often face this challenge. But thanks to our care services staff and partners, and assistive technology, people living with ALS can keep communicating, even after they’ve lost their voices.

After noticing that people in more rural areas who were interested in accessing alternative communication strategies weren’t receiving comparable services to those in larger cities, The ALS Association Oregon and SW Washington Chapter expanded its communication support.

The chapter launched a unique partnership with the University of Oregon’s Communication Disorders and Sciences program.

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Guest Post: Through Triathlons, I Can Make a Difference

By Heather Grahame

One day you find you’re having trouble tying your shoes and buttoning your shirt. After many months, numerous doctor visits, and a battery of tests, you’re told you have ALS.

An ALS diagnosis is unbelievably crushing. The impact is impossible to fully appreciate until it hits you or someone you know. The disease is a monster, and it only has one direction. You progress until you can no longer eat, speak, walk, or breathe. Research into finding a cure is vital. That’s why I run, bike, and swim.

My brother, Tom, was diagnosed with ALS in October 2016. He and his wife, Jan, are responding as positively as possible.
Tom has decided to use his ALS as a means of advancing scientific research. He researched ALS in depth and, with the help of his ALS doctor at Georgetown University, chose to take a drug called Tasigna. The drug was originally developed to treat cancer, but it seems to have slowed his progression and reduced some of his symptoms.

Continue reading Guest Post: Through Triathlons, I Can Make a Difference