Connecting ALS

40 Episodes
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By: ALS Association

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.

"Supporting Young Caregivers…"
Last Thursday at 4:26 PM

Welcome to Connecting ALS. This week, Sandra Sullivan, The ALS Association’s director of chapter communications, talks to Sarah Trott, a former contestant on The Bachelor, about her connection to ALS and her work trying to support and connect young caregivers like herself around the country.


"Walk Your Way to Defeat ALS…"
04/08/2021

Welcome to Connecting ALS. This week we dig into the creative and innovative ways walk teams are embracing the opportunity to Walk Your Way during the 2021 spring Walk to Defeat ALS season.


"A New Season Begins in Baseball’s Longstanding Commitment to Fighting ALS…"
04/01/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Chuck Haberstroh and Adam Wilson, co-chairs of the committee who led the fight to create Lou Gehrig Day.


"Gearing Up for Another Big Year in ALS Advocacy..."
03/25/2021

Welcome to Connecting ALS. This week, Mike and Jeremy welcome back Ashley Smith, The ALS Association's Associate Director of Grassroots Advocacy, for an overview of 2021 legislative and appropriation priorities.


"Focusing on the Best in Patient Care in Hospital and Clinic Settings…"
03/18/2021

Welcome to Connecting ALS. This week, Mike and Jeremy recognize Patient Safety Awareness Week with Leslie Ryan and welcome Lauren Brown in celebration of Certified Nurse’s Day.


"Maintaining Good Nutrition With ALS…"
03/11/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter, to serve up some helpful tips on maintaining good nutrition while living with ALS.


"Finding Hope on the Horizon Through ALS Research…"
03/04/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to discuss some recent news in ALS research and signs of hope on the horizon.


"Showing Our Stripes for Rare Disease Day…"
02/25/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Debbie Drell, director of membership at the National Organization for Rare Disorders, to discuss Rare Disease Day, the origin of NORD’s “Show Your Stripes” campaign and how NORD’s patient advocacy work has continued during the pandemic.


"Traveling While Living With ALS…"
02/19/2021

Welcome to Connecting ALS. This week, Mike and Jeremy explore the challenges of traveling while living with ALS and some ways to plan ahead to make your next trip a success.


"Honoring International Day of Women and Girls in Science…"
02/11/2021

Welcome to Connecting ALS. This week, Mike and Jeremy commemorate International Day of Women and Girls in Science with Drs. Ericka Greene and Sandrine Da Cruz.


"The Importance of Hearing From Caregivers About Their Needs…"
02/04/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, to learn how the voices of ALS caregivers are being elevated to make sure services and programs are tailored to their needs.


"Health Care Advocacy Blueprint for the First 100 Days…"
01/28/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Katie Berge, director of federal affairs at The Leukemia & Lymphoma Society. Katie walks us through the first 100 days of the Biden administration and lays out the health care fights ahead.


"A Conversation with MLB Umpire, Phil Cuzzi..."
01/27/2021

Welcome to Connecting ALS. In this bonus episode, Mike has a conversation with legendary Major League Baseball umpire, Phil Cuzzi, about his personal connection to ALS and what he's doing to make a difference.


"Checking in on Access to COVID-19 Vaccines…"
01/21/2021

Welcome to Connecting ALS. This week, Mike and Jeremy are joined by Dr. Richard Bedlack, director of the Duke ALS Clinic, for an update on the COVID-19 pandemic and the latest on access to vaccines.


"Bringing the Five-Month Waiting Period for SSDI Benefits to an End…"
01/14/2021

Welcome to connecting ALS. This week, Mike and Jeremy talk to Sen. Sheldon Whitehouse of Rhode Island to look back on the passage of the ALS Disability Insurance Access Act.


"Managing COVID-19 and Social Distancing While Living With ALS..." [Replay]
12/31/2020

Welcome to Connecting ALS. This week's episode is a replay of one of our favorites from 2020; we talk to three families who share their experiences living with ALS during the COVID-19 pandemic.


"A Look Back on the Year in ALS Care Services…"
12/24/2020

Welcome to Connecting ALS. 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 delivery of clinical care in 2020 and to look ahead to the coming year.


"A Look Back on the Year in ALS Advocacy…"
12/17/2020

Welcome to Connecting ALS. This week, we 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 in 2021.


"Exploring What We Know About the COVID-19 Vaccines…"
12/10/2020

Welcome to Connecting ALS. This week, we are joined by Dr. Clifton Gooch who takes us through the latest news on the COVID-19 vaccines, explains their safety and efficacy, and talks about what they mean for people with ALS.


"A Look Back on the Year in ALS Research…"
12/03/2020

Welcome to Connecting ALS. We 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 through the pandemic, and what has her excited heading into 2021.


"Digging into the ACT for ALS…"
11/19/2020

Welcome to Connecting ALS. We 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 why she became a leader in the fight against ALS.


"A Veteran’s Day Conversation…"
11/12/2020

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


"Honoring ALS Caregivers During Family Caregivers Month…"
11/05/2020

Welcome to Connecting ALS. This week, we kick off Family Caregivers Month with Grace Whiting, president and CEO of the National Alliance for Caregiving.


"Dr. Lou Libby Helps Honor Respiratory Care…"
10/29/2020

Welcome to Connecting ALS. This week we commemorate Respiratory Care Week by welcoming back Dr. Lou Libby, a practicing physician with Oregon Clinic and the lead Pulmonologist at The Providence ALS Center.


"Last Minute Tips on Voting While Living with ALS…"
10/27/2020

Welcome to Connecting ALS. In this bonus episode, Lee Page provides guidance on casting in-person votes while dealing with mobility challenges and a global pandemic.


"Survivability Data Adds to Urgency to Make AMX0035 Available…"
10/22/2020

Welcome to Connecting ALS. This week, Mike and Jeremy talk to Dr. Sabrina Paganoni, co-director of MGH Neurological Clinical Research Institute and principal investigator of the CENTAUR trial evaluating the effects of Amalyx Pharmaceutical’s AMX0035 on people living with ALS.


"Connecting with Born 2 Battle..."
10/15/2020

Welcome to Connecting ALS. 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.


"Voting in 2020..."
10/08/2020

Welcome to Connecting ALS. For this week's episode, we welcome voting rights expert, Dara Baldwin, Director of National Policy for the Center for Disability Rights, to discuss how to vote during a pandemic and what to consider if you're facing mobility and motor function challenges.


"The Critical Role Physical Therapy Plays in Multidisciplinary Care…"
10/01/2020

Welcome to Connecting ALS. To kick off National Physical Therapy Month, we are joined by Dr. Shannon Terrell, a physical therapist at Kaiser Permanente Skyline Medical Offices in Colorado.


"A Sunny Conversation…"
09/24/2020

Welcome to Connecting ALS. This week we chat with ALS advocate Sunny Brous, who shares how she finds hope and maintains connections during what has been a rollercoaster of a year.


"Living With ALS When A Natural Disaster Hits…"
09/17/2020

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


"Injecting a Dose of Hope and Urgency in the Fight…"
09/10/2020

Welcome to Connecting ALS. This week we continue the discussion around Amylyx Pharmaceutical’s phase 2 clinical trial results of AMX0035, which was shown to slow down progression of ALS in trial participants.


"Expediting Access to a Promising New ALS Drug…"
09/03/2020

Welcome to Connecting ALS. This week we 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 effective at slowing down disease progression.


"College in 2020 and Resources for Families Facing ALS..."
08/27/2020

Welcome to Connecting ALS. This week we discuss what back-to-school means in 2020 for families impacted by ALS.


"Hearing Directly From the ALS Community Through ALS Focus…"
08/20/2020

Welcome to Connecting ALS. This week we turn our focus to ALS Focus, a survey platform that brings the needs and perspectives of people living with ALS to the center of our fight.


"Looking at the Link Between Exposure to Algal Blooms and ALS…"
08/13/2020

Welcome to Connecting ALS. This week we talk to Dr. Elijah Stommel, a neurologist at Dartmouth-Hitchcock Health and a professor of neurology at the Geisel School of Medicine at Dartmouth, about the connection between exposure to blue-green algae toxins and the development of ALS.


"Perseverance in the Search for Treatments…"
08/06/2020

Welcome to Connecting ALS. This week we 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 Fellowship.


"Living in the Present to Enhance Wellness…"
07/30/2020

Welcome to Connecting ALS. This week we get ready for National Wellness Month by checking in with Dr. Ellen Langer, a social psychologist at Harvard known as the mother of mindfulness.


"A Conversation with Lorri Carey…."
07/16/2020

Welcome to Connecting ALS. This week we talk to Lorri Carey, a veteran leader in the fight against ALS and host of the podcast “I’m Dying to Tell You.”


"Intimacy and ALS..."
07/09/2020

Welcome to Connecting ALS. In this episode, we discuss intimacy in relationships where ALS is present with Dr. Alair Altiero of Penn State’s Hershey Medical Center.