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Connecting ALS

61 EpisodesProduced by ALS AssociationWebsite

Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

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"Bringing the Five-Month Waiting Period for SSDI Benefits to an End…"

January 14th, 2021

This week, Mike and Jeremy talk to Senator Sheldon Whitehouse of Rhode Island to look back on the passage of the ALS Disability Insurance Access Act, which ended the five-month waiting period for people with ALS to …

"Managing COVID-19 and Social Distancing While Living With ALS..." [Replay]

December 31st, 2020

This week's episode is a replay of one of our favorites from 2020; Mike and Jeremy talk to three families who share their experiences living with ALS during the COVID-19 pandemic and how they are managing social …

"A Look Back on the Year in ALS Care Services…"

December 24th, 2020

This week, we are joined by Lori Banker-Horner, The ALS Association’s director of clinical programs and Leslie Ryan, the Association’s director of education and professional development programs, to reflect on the …

"A Look Back on the Year in ALS Advocacy…"

December 17th, 2020

This week, Mike and Jeremy are joined by Abram Bieliauskas, associate director of government affairs at The ALS Association, to reflect on some big wins for ALS advocates in 2020 and to look ahead at the fights to come …

"Exploring What We Know About the COVID-19 Vaccines…"

December 10th, 2020

This week, Mike and Jeremy are joined by Dr. Clifton Gooch, chair of the University of South Florida’s Department of Neurology and a member of The …

"A Look Back on the Year in ALS Research…"

December 3rd, 2020

This week Mike and Jeremy are joined by Dr. Jill Yersak, vice president of mission strategy at The ALS Association, who walks us through some of the highlights in ALS research from 2020, how ALS researchers persevered …

"Digging into the ACT for ALS…"

November 19th, 2020

This week, Mike and Jeremy are joined by Sen. Lisa Murkowski (R-Alaska), to discuss the ACT for ALS bill, the Senate’s push to double funding for the ALS Research Program at the Department of Defense to $40 million, and …

"A Veteran’s Day Conversation…"

November 12th, 2020

This week, Mike and Jeremy honor Veteran’s Day by talking to John Hartwell, who reflects on his military service and living with ALS during a pandemic.

To learn more about the connection between military service and ALS, …

"Honoring ALS Caregivers During Family Caregivers Month…"

November 5th, 2020

This week, Mike and Jeremy kick off Family Caregivers Month with Grace Whiting, president and CEO of the National Alliance for Caregiving. Grace shares insight from the Alliance’s Caregiving in the U.S. 2020 report and …

"Dr. Lou Libby Helps Honor Respiratory Care…"

October 29th, 2020

This week Mike and Jeremy commemorate Respiratory Care Week by welcoming back Dr. Lou Libby, a practicing physician with Oregon Clinic and the lead …

"Last Minute Tips on Voting While Living with ALS…"

October 27th, 2020

In the closing days of the 2020 election, Mike and Jeremy are joined by Lee Page, senior associate director of advocacy at Paralyzed Veterans of America, who provides guidance on casting in-person votes while dealing …

"Survivability Data Adds to Urgency to Make AMX0035 Available…"

October 22nd, 2020

This week, Mike and Jeremy talk to Dr. Sabrina Paganoni, co-director of MGH Neurological Clinical Research Institute and principal investigator of …

"Connecting with Born 2 Battle..."

October 15th, 2020

On this week's episode we welcome in the hosts of the podcast Born 2 Battle, Chris Beckette and Nathaniel Palone, to discuss the origin of their show and their plans to continue raising awareness for ALS. 
You can find …

"Voting in 2020..."

October 8th, 2020

For this week's episode, Jeremy and Mike welcome voting rights expert, Dara Baldwin, Director of National Policy for the Center for Disability …

"The Critical Role Physical Therapy Plays in Multidisciplinary Care…"

October 1st, 2020

To kick off National Physical Therapy Month, Mike and Jeremy are joined by Dr. Shannon Terrell, a physical therapist at Kaiser Permanente Skyline …

"A Sunny Conversation…"

September 24th, 2020

This week, Mike and Jeremy chat with ALS advocate Sunny Brous, who shares how she finds hope and maintains connections during what has been a …

"Living With ALS When A Natural Disaster Hits…"

September 17th, 2020

This week, Mike and Jeremy are joined by Donnie Graham and Jan Steinbock, who tell us how they are facing wildfires and a global pandemic with ALS.

For more information about natural disaster preparedness, read

"Injecting a Dose of Hope and Urgency in the Fight…"

September 10th, 2020

This week, Mike and Jeremy continue the discussion around Amylyx Pharmaceutical’s phase 2 clinical trial results of AMX0035, which was shown to slow …

"Expediting Access to a Promising New ALS Drug…"

September 3rd, 2020

This week, Mike and Jeremy dig into the latest development out of Amylyx Pharmaceuticals, which recently announced findings of a phase 2 clinical trial of AMX0035, a drug compound shown to be safe and clinically …

"College in 2020 and Resources for Families Facing ALS..."

August 27th, 2020

This week, Mike and Jeremy discuss what back-to-school means in 2020 for families impacted by ALS. They chatted with the Rudin brothers, Eli and …

"Hearing Directly From the ALS Community Through ALS Focus…"

August 20th, 2020

This week, Mike and Jeremy turn their focus to ALS Focus, a survey platform that brings the needs and perspectives of people living with ALS to the center of our fight. They are joined by Dr. Sarah Parvanta, director of …

"Looking at the Link Between Exposure to Algal Blooms and ALS…"

August 13th, 2020

This week, Mike and Jeremy hear from Dr. Elijah Stommel, a neurologist at Dartmouth-Hitchcock Health and a professor of neurology at the Geisel …

"Perseverance in the Search for Treatments…"

August 6th, 2020

On this week’s episode, Mike and Jeremy talk to Dr. Lauren Laboissonniere, a neuroscientist at the Ranum Lab at the University of Florida and a recipient of The ALS Association’s Milton Safenowitz Postdoctoral …

"Living in the Present to Enhance Wellness…"

July 30th, 2020

On this week’s episode, Mike and Jeremy get ready for National Wellness Month by checking in with Dr. Ellen Langer, a social psychologist at Harvard …

"A Conversation with Lorri Carey…."

July 16th, 2020

On this week’s episode, Mike and Jeremy talk to Lorri Carey, a veteran leader in the fight against ALS and host of the podcast “I’m Dying to Tell You.” Lorri talks about her 16-year journey with ALS, all the many ways …

"Intimacy and ALS..."

July 9th, 2020

This week, Mike and Jeremy bring in an expert to help cover a topic that isn’t always easy to discuss in a clinical setting; intimacy and ALS. Dr. Alair Altiero is a mental health professional who works in the ALS …

"Identifying Red Flags For Off-Label Drug Use..."

July 2nd, 2020

This week, Mike and Jeremy talk to Dr. Richard Bedlack, director of the Duke ALS Clinic and head of ALSUntangled, about a recent paper he co-authored laying out common red-flags patients need to know about when …

"Checking on the Global Fight Against ALS…"

June 25th, 2020

This week, Mike and Jeremy commemorate Global ALS/MND Awareness Day with members of the International Alliance of ALS/MND Associations and get an update on the fight against ALS motor neurone diseases around the world. …

"Remembering Lou Gehrig on His Birthday and Celebrating Father’s Day With ALS…"

June 18th, 2020

On this week’s episode, Mike and Jeremy talk to Larry Falivena, a member of The ALS Association’s national board of trustees. Larry’s shares his memories from his 2019 tour of Major League Baseball stadiums to raise …

"Partnering With BrainStorm and I AM ALS in the Search for Biomarkers…"

June 11th, 2020

This week, Mike and Jeremy talk to Dr. Ralph Kern, president and chief medical officer at BrainStorm Cell Therapeutics, and Dr. Kuldip Dave, vice …

"Managing COVID-19 and Social Distancing While Living With ALS..."

May 28th, 2020

On today’s episode, Mike and Jeremy talk to three families living with ALS, who share their experiences living with ALS during the COVID-19 pandemic …

"The Future of ALS Clinical Trials…"

May 21st, 2020

On this week’s episode, Mike and Jeremy talk to Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital and director of the Sean M. …

"Helping Kids Affected by ALS..."

May 14th, 2020

This week, Mike and Jeremy talk to Dr. Melinda Kavanaugh, a clinical social worker and associate professor at the University of Wisconsin-Milwaukee, …

"The Impact of ALS on Families, Mother’s Day, and Creating New Traditions…"

May 7th, 2020

This week, Mike and Jeremy talk to Betsy McCormick and Maya Bulmer about how their family is adjusting to life since Betsy was diagnosed with ALS in …

"Helping Students Overcome the Devastating Financial Impact of ALS…"

April 30th, 2020

This week, Mike and Jeremy talk to Mark Calmes, vice chair of The ALS Association Board of Trustees, about the Jane Calmes ALS Scholarship Fund, …

Call for Mother's Day Stories

April 28th, 2020

May 10 is Mother's Day, so after you call the florist and get flowers ordered, grab your phone and share a reflection about moms and ALS. Simply record it using a voice memo app on your phone and e-mail it to

"Creative Volunteering During COVID-19 and Long-Term Trends..."

April 23rd, 2020

This week, Mike and Jeremy celebrate National Volunteer Week by exploring some of the creative ways volunteers are continuing to serve the community …

"Bioethics and Hospital Care During the COVID-19 Pandemic …"

April 16th, 2020

On this episode, Mike and Jeremy talk to Dr. Barron Lerner, a medical doctor and director of the undergraduate bioethics curriculum at New York …

"Collaboration in ALS Research and the Implications of COVID-19 ..."

April 9th, 2020

Welcome to Connecting ALS. In this episode we talk to Dr. Manish Raisinghani, president and CEO of Target ALS, about conducting research during the …

"Telehealth and the Evolution of Clinical Care During COVID-19 …"

April 2nd, 2020

On this episode of Connecting ALS, Mike and Jeremy talk to Lauren Tabor Gray, Ph.D., CCC-SLP, a clinical researcher and speech pathologist and …

BONUS EPISODE: "Staying Focused Through COVID-19..."

March 27th, 2020

In this bonus episode, we check-in with Calaneet Balas, President and CEO of The ALS Association, to discuss the impact of the ongoing pandemic on the ALS community. If you have questions about the COVID-19 pandemic or …

"How the ALS Community Continues to Advocate During the COVID-19 Pandemic..."

March 26th, 2020

Welcome to Connecting ALS, your weekly podcast from The ALS Association. This episode shines a spotlight on the public policy priorities during the …

"What the ALS Community Needs to Know Right Now About COVID-19 … "

March 19th, 2020

In this episode Mike and Jeremy turn to Jennifer Hjelle, executive director of The ALS Association Minnesota/North Dakota/South Dakota Chapter to facilitate a conversation about COVID-19 with Dr. Neil Thakur, Executive …

“Helping People Live Longer and Stronger With ALS...”

March 12th, 2020

In this episode Mike and Jeremy are joined by Dr. Neil Thakur, Executive Vice President of Mission Strategy at The ALS Association, and Mark Calmes, Vice Chair of The ALS Association's Board of Trustees, for updates on …

"ALS Research Now and Into the Future..."

March 5th, 2020

This episode is the first in our new weekly format and hosts Mike and Jeremy were joined by Dr. Kuldip Dave, Vice President of Research at The ALS …

"Parenting While Living With ALS and A Moment With Don and David..."

February 13th, 2020

This month we talk with Clay and Jana Ahrens about parenting while living with ALS and take a moment with Don and David who share what support group has meant to them and the importance of levity in their friendship.

Bonus Episode: "A Moment With Sarah"

January 16th, 2020

As part of our ongoing ‘A Moment With...’ series, we recently sat down with Sarah Martin. Sarah’s mother Linda Griffiths died of ALS in June of last year, and as she continues to grieve the loss, Sarah wanted to tell …

"ALS Research and the Therapy Development Process..."

January 9th, 2020

Episode nine takes an in-depth look at ALS Research and the therapy development process with Dr. Jill Yersak, Senior Director of Mission Strategy at The ALS Association. Dr. Yersak discusses promising potential …

In Memoriam: Pete Frates

December 13th, 2019

This week Pete Frates died at the age of 34, seven years after his ALS diagnosis. Pete altered the landscape of ALS so greatly, we felt it was necessary to take a few minutes to discuss his impact. In this brief …

"Remembering Pete Frates, Preparing for the Holidays, and A Moment With Jan..."

December 12th, 2019

For December we’re focusing on how we celebrate the holidays and support those living with ALS. We connected with Anne Supplee, our in-house expert, …

Bonus Episode: "A Moment With John"

December 3rd, 2019

Last month we introduced a recurring segment called "A Moment With..." These are meant to be short stories that give us a glimpse into living with ALS through moments of inspiration and joy. They will always be at the …

"National Family Caregivers Month and A Moment With John..."

November 14th, 2019

In November we are celebrating National Family Caregivers Month, which means recognizing all the incredible individuals who commit to caring for a loved one. That is the theme for the month and we’ve got some compelling …

Bonus Episode: Panel Discussion on Caregiving

November 8th, 2019

On Wednesday we were fortunate to have Gary and Kathy in the Connectivity Center. They were here to share their experiences as caregivers with our support group as part of National Caregivers Month. Each had a lot to …

"ALSUntangled and a Listening Tour..."

October 10th, 2019

This month we were very fortunate to secure some time with arguably the most influential ALS specialist in the world, Dr. Richard Bedlack of Duke University. As always, Dr. Bedlack has a number of irons in the fire and …

"Association Insight and Platform Trials..."

September 12th, 2019

This month we were able to connect with two very influential figures in the world of ALS. First we met with The ALS Association’s President and CEO, Calaneet Balas, who gave us a window into what the greater …

"Feeding tubes and the Mind Body Connection..."

August 9th, 2019

This month we go deep on the topic of feeding tubes with two experts from the ALS Center of Excellence at Hennepin Healthcare in Minneapolis, MN. We …

"Palliative care, a Twins legend, and advocacy in D.C...."

July 11th, 2019

We had the good fortune of lining up three fantastic guests on a variety of topics this month. We first brought in Dr. Sam Maiser, from Hennepin County Medical Center, to explore the benefits of palliative care …

"Home health, voice banking, and clinical care..."

June 13th, 2019

On this month’s episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to …

Advocacy Alert: Changes to CMS

May 23rd, 2019

We're dropping a special bonus episode of the pod to address a developing issue that requires all of us to take action! The Centers for Medicare and Medicaid (CMS) have mandated that noninvasive ventilators (bipap) go …

"For our debut episode..."

May 9th, 2019

Welcome, everyone, to Connecting ALS, a podcast dedicated to all facets of the disease, that we will produce monthly from the headquarters of the Minnesota, North Dakota, South Dakota Chapter of The ALS Association, in …

"This is Connecting ALS"

April 24th, 2019

Connecting ALS is a podcast dedicated to all facets of the disease, coming to you from the Minnesota, North Dakota, South Dakota Chapter of The ALS …
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