Connecting ALS

10 Episodes
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By: ALS Association

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.

Re-Release: A Conversation with Brooke Eby...
12/28/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.


Today’s episode, which originally ran on July 23rd of this year, is a conversation between two of our favorite people, Jeremy and Brooke Eby. She’s a social media influencer living with ALS who always finds ways to confront her condition with grace, humor, and style.


Re-Release: My ALS Journey...
12/21/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.


In this episode, from May 25th of 2023, Jeremy spoke with Leslie Ryan, Senior Director of Education and Professional Competencies at The ALS Association about the new My ALS Journey tool, a web-based platform that provides personalized guidance and support to people living with ALS.


Re-Release: Advocacy in Action...
12/14/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.
 
 In this episode, which originally aired on June 9th, 2022, Jeremy talks to Dr. Neil Thakur, Chief Mission Officer at The ALS Association, and Melanie Lendnal, the Association’s senior vice president of policy and advocacy, about the role of advocacy, and how’s it’s central to the fight for improving the lives of people living with ALS.


Re-Release: The Genetics of ALS...
12/07/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.
 
This episode, which first aired on February 16th 2023, is a conversation between host Jeremy Holden, ALS Association Trustee, Larry Falivena and neurologist and leading ALS researcher, Dr. Michael Benatar. They talk about interesting new developments in what we understand about the genetic underpinnings of ALS, and how that understanding might someday lead to interesting new treatments.


Re-release: Supporting Young Caregivers...
11/30/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.


In this episode, which first aired on April 15th 2021, 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.


Re-release: Reducing the Harms of Traveling While Living with ALS...
11/16/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.


In today’s episode, which first aired on August 4th, 2022, Jeremy talks to Maceo Carter and Heather Ansley from the Paralyzed Veterans of America about the ins and outs of traveling with a disability – particularly the challenges of traveling by air.


Re-release: Family Caregivers Month...
11/09/2023

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.

In today’s episode, which first aired on Nov 4 2021, Jeremy celebrates Family Caregivers’ Month with guest co-host Steve Becvar, who is  the executive director of The ALS Association’s Greater San Diego Chapter. They speak with  Ann Larson, who was caregiver to her husband during his fight against ALS, and Jennifer Meyer, care services coordinator at The ALS Associ...


Action Plan Being Developed to Make ALS Livable…
08/17/2023

This week, Jeremy welcomes Kathleen Sheehan, Vice President of Public Policy at The ALS Association, for an update on the National Academies of Sciences, Engineering, and Medicine Committee’s action plan to make ALS livable and to accelerate the search for treatments.

 

Learn more about the NAS working group at https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-life

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.


Racial Disparities in Time to Diagnosis…
08/10/2023

This week, Jeremy talks to Dr. Kelly Gwathmey, Chair of Neuromuscular Neurology at Virginia Commonwealth University, about recent research showing racial disparities in the time it takes to confirm an ALS diagnosis.

Learn more about the research conducted at VCU at https://www.sciencedirect.com/science/article/pii/S0022510X20303919

 

For more information about the importance of a timely diagnosis, go to https://www.als.org/thinkals/benefits-timely-diagnosis

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.


Prioritizing Wellness While Living With ALS…
08/03/2023

This week, Jeremy kicks off National Wellness Month with Melissa Enfinger from The ALS Association’s Care Services team.

 

To participate in research into the mental health and wellness needs of people living with ALS, go to https://milwaukee.qualtrics.com/jfe/form/SV_4I9CXsunR8LrTYa

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

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