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Connecting ALS

Health & Wellness Podcasts

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.

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.

Location:

St. Paul, MN

Description:

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.

Language:

English

Contact:

6124552558


Episodes

"Showing Our Stripes for Rare Disease Day…"

2/25/2021
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.

Duration:00:20:11

"Traveling While Living With ALS…"

2/19/2021
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.

Duration:00:41:26

"Honoring International Day of Women and Girls in Science…"

2/11/2021
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.

Duration:00:36:59

"The Importance of Hearing From Caregivers About Their Needs…"

2/4/2021
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.

Duration:00:21:54

"Health Care Advocacy Blueprint for the First 100 Days…"

1/28/2021
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.

Duration:00:14:56

"A Conversation with MLB Umpire, Phil Cuzzi..."

1/27/2021
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.

Duration:00:10:55

"Checking in on Access to COVID-19 Vaccines…"

1/21/2021
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.

Duration:00:21:07

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

1/14/2021
Welcome to connecting ALS. 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.

Duration:00:14:46

"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.

Duration:00:18:04

"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.

Duration:00:28:52

"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.

Duration:00:21:16

"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.

Duration:00:45:52

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

12/3/2020
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.

Duration:00:19:52

"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.

Duration:02:54:52

"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.

Duration:00:25:29

"Honoring ALS Caregivers During Family Caregivers Month…"

11/5/2020
Welcome to Connecting ALS. This week, we kick off Family Caregivers Month with Grace Whiting, president and CEO of the National Alliance for Caregiving.

Duration:00:21:12

"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.

Duration:01:17:10

"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.

Duration:00:11:03

"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 Amylyx Pharmaceutical’s AMX0035 on people living with ALS.

Duration:00:16:49

"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.

Duration:01:29:48