Connecting ALS

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.

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.

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.

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.

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.

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 Association MN/ND/SD Chapter.

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.

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.

This week, Jeremy catches up with Brooke Eby, a social media influencer living with ALS, about her efforts to raise awareness of ALS and critical funding for ALS research, and how she uses levity and humor along the way.

Find ways to follow Brooke’s journey at https://hoo.be/limpbroozkit

Check out Brooke’s appearance on Today at https://www.today.com/video/meet-the-woman-facing-als-with-heart-and-humor-174780997741

Listen to Brooke’s conversation with Lorri Carey at https://imdyingtotellyoupodcast.com/uncategorized/fighting-als-with-humor-brooke-eby/

To learn more about August Advocacy Action Month go to https://www.als.org/advocacy/action-center

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

This week, Jeremy explores some of the ongoing fights to make insurance work more effectively for people living with ALS. He is joined by Shannon Todd from The ALS Association’s Care Services team and ALS advocate Katie Adams, who updates us on her ongoing fight for insurance coverage of her power wheelchair.

Learn more about Katie Adams’s story at https://www.als.org/blog/katie-adams-fighting-change-everyone-als

Read about the support available to help navigate insurance barriers at https://www.als.org/blog/katie-adams-fighting-change-everyone-als

For more information on the ways insurers erect barriers to access at https://www.als.org/blog/breaking-barriers-fight-make-health-care-affordable-and-accessible

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