Connecting ALS

Health & Wellness Podcasts

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. 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 in partnership with CitizenRacecar. 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

Advocating for Access to Genetic Testing…

2/2/2023
This week Jeremy talks to Melanie Lendnal and Lindsay Gill from The ALS Association’s public policy team to learn more about the fight for public policies that will ensure access to genetic counseling and testing and a bill in Maryland that will prohibit discrimination based on the results of a genetic test. Learn more about the Genetic Testing Protection Act in Maryland at https://www.als.org/stories-news/als-association-leads-fight-ban-life-insurance-discrimination-states Sign up to...

Duration:00:20:19

Making Video Games Accessible for People Living with ALS…

1/26/2023
This week Jeremy talks to a team of researchers in Australia who are looking into the ways video games can be more accessible for gamers living with ALS. Follow Dr. Kirsten Harley’s story at https://kirstenharleymnd.home.blog/author/drkirstenharley/ Learn more about research into making video games more inclusive at https://www.mndaustralia.org.au/articles/why-videogames-matter-for-mnd-these-holidays This episode is brought to you by The ALS Association in partnership with...

Duration:00:24:11

Expanding Access to Clinical Trials …

1/19/2023
This week, Jeremy explores efforts to increase the number of clinical trials and expand access to those trials with renowned ALS researcher, Dr. Merit Cudkowicz. Learn more about the Clinical Trial Capacity Awards at https://www.als.org/research/funding-opportunities/trial-capacity-awards-2022 This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:11:10

Revisiting Her ALS Story...

1/12/2023
As we take a little break this week, we invite you to revisit one of our episodes released last year featuring Her ALS Story. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:18:24

Where We Are in the Fight Against ALS...

1/5/2023
This week Jeremy is joined by Scott Kauffman, chairman of The ALS Association board of trustees, to reflect on progress made in the fight against ALS in 2022 and to preview some of the work on the horizon in 2023. Read The ALS Association’s 2022 Year-End Report at https://www.als.org/blog/2022-year-end-report This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:11:35

Looking Back on the Fight for AMX0035…

12/29/2022
This week, Jeremy closes out the year by looking back at the successful fight to get the FDA to approve AMX0035 for the treatment of ALS. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:12:06

Urging Insurers to Make Treatments Available…

12/22/2022
This week, Jeremy welcomes Melanie Lendnal, The ALS Association’s vice president of policy and advocacy, to learn how advocacy can be deployed to make sure insurers provide access to approved treatments. Learn more about the letters to insurers at https://www.als.org/stories-news/als-association-fights-access-relyrvio For more information on the VA’s decision to approve access to Relyvrio go to https://www.als.org/stories-news/va-approves-access-relyvrio-veterans-living-als Explore...

Duration:00:12:59

The Latest on the Effectiveness of Edaravone…

12/15/2022
This week, Jeremy welcomes renowned ALS researcher Dr. James Berry to discuss the latest evidence of the effectiveness of edaravone. Learn more about the findings at https://pubmed.ncbi.nlm.nih.gov/35958519/ This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:13:46

Helping Kids and Communities Understand ALS Through Animated Film…

12/8/2022
This week Jeremy shines a light on Luka, an animated robot and star of Luka & The Lights, a short film in development that was created by a person living with ALS after he had to explain his diagnosis to his young kids and create a new way to help explain the disease. Learn more about Luka & The Lights and the work to bring it to the world at https://lukaandthelights.com/ Read about Anjo and Sasha’s story at https://lukaandthelights.com/als-stories/anjo-en-sascha/ Check out the Luka...

Duration:00:15:57

A Status Update on the Global Fight Against ALS…

12/2/2022
Today, we close out our week of special programming centered on The International Alliance of ALS/MND Associations annual meeting and Allied Professionals Forum with a conversation with Cathy Cummings, the Alliance’s executive director. Cathy lays out what she sees on the horizon in the global fight against ALS. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:08:55

Improving the Food Environment for People Living with ALS…

12/1/2022
Today, Jeremy talks to Guðlaug Gísladóttir, a presenter at this year’s Allied Professionals Forum and a dietician at the National University Hospital of Iceland, about ways to make meal times and eating more enjoyable for people living with ALS. For tips on maintaining good nutrition while living with ALS go to https://www.als.org/navigating-als/resources/maintaining-good-nutrition-als This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:12:16

The Right to Quality of Life…

11/30/2022
Today, Jeremy talks to Dr. Colleen O’Connell, Medical Director at New Brunswick’s Stan Cassidy Centre for Rehabilitation and Clinical Research Director of University of New Brunswick Institute of Biomedical Engineering, who delivered the keynote address during the International Alliance of ALS/MND Associations’ annual meeting, talking about the right of everyone living with ALS to a quality of life. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:11:37

Helping the Global ALS/MND Community Access Care…

11/29/2022
Today, Jeremy checks in from the International Alliance of ALS/MND Associations for an update on access to high quality care around the world and talks to Maureen Clark, Director of Business Intelligence at The ALS Association about efforts to build a clinic locator map. Learn more about multidisciplinary care for people living with ALS at https://www.als.org/local-support/certified-centers-clinics Find an ALS clinic near you at...

Duration:00:05:38

Coming Together as a Global Community…

11/28/2022
Today, Jeremy kicks off a week of coverage in conjunction with the International Alliance of ALS/MND Associations’ meeting and the Allied Professionals forums by connecting with Calaneet Balas, President and CEO of The ALS Association, and Chair of the International Alliance. You can follow The International Alliance of ALS/MND Associations on Twitter at https://twitter.com/ALSMNDAlliance Keep up with The International Alliance of ALS/MND Associations via Facebook at...

Duration:00:09:13

Her ALS Story...

11/17/2022
This week, Jeremy welcomes members of Her ALS Story to talk about the power of connecting with people who are on a similar journey while living with ALS. Learn more about Her ALS Story at https://heralsstory.org/ This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:18:06

Reflecting on ALS and the Military...

11/10/2022
This week Jeremy is joined by Gerald McCormick, a veteran living with ALS and former state lawmaker in Tennessee, reflecting on the connection between ALS and military service and digging into some ways to engage in advocacy to move the fight against ALS forward. Learn more about the connection between ALS and military service at https://www.als.org/navigating-als/military-veterans Find the full report on ALS and the military at...

Duration:00:20:30

"Kicking Off Family Caregivers Month with Kristina Woody…"

11/3/2022
This week, Jeremy welcomes Kristina Woody on to talk about her role as a caregiver to her husband, Lamar, and to reflect on what more we can do to support family caregivers. For more information on how to support caregivers, go to https://www.als.org/navigating-als/for-caregivers Learn more about caregiver needs at https://www.als.org/research/als-focus/survey-results/survey-3-results Read about the Woody family at https://www.als.org/blog/woody-family-living-als This episode is...

Duration:00:20:37

"The Fight for Justice for ALS Veterans..."

10/27/2022
This week, Jeremy is joined by Daniel Cramer from The ALS Association advocacy and public policy team and Jann Vasiloff, a leading advocate of the Justice for ALS Veterans Act about the fight to make sure surviving spouses have access to the benefits they deserve. Tell your member of Congress to support the Justice for ALS Veterans Act by going to https://als.quorum.us/campaign/42907/ Learn more about the Justice for ALS Veterans Act at...

Duration:00:20:52

A Conversation With Lamar Woody …

10/20/2022
This week Jeremy talks to Lamar Woody, who was diagnosed with ALS in 2018, about his life, his family and what he’s doing to help create a world without ALS. To follow the Woody family’s story over the coming weeks, check out The ALS Association’s blog at https://www.als.org/blog. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:20:16

Mining Data to Help Build a World Without ALS…

10/13/2022
This week, Jeremy talks to Pam Knott, Vice President of Data and Technology at The ALS Association, to learn how data is helping make ALS a livable disease and pointing the way to treatments and cures. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Duration:00:16:58