Connecting ALS

Welcome to Connecting ALS, your weekly podcast from The ALS Association. This episode shines a spotlight on the public policy priorities during the COVID-19 pandemic, and how our ALS community is advocating amid extreme social distancing.

In this episode, Mike and Jeremy are joined by Kathleen Sheehan, vice president of public policy at The ALS Association, and Ashley Smith, associate director of grassroots advocacy at the Association. Kathleen and Ashley take us through digital advocacy efforts and the key public policy priorities being pursued as part of COVID-19 response legislation. 

To learn about The ALS Association’s public policy priorities, visit http://www.alsa.org/advocacy/Public-Policy-Priorities.html.

To become an advocate, visit https://alsa.quorum.us/register/

To read up on the changes to telehealth access discussed in this episode, visit https://alsa.quorum.us/register/

For the Facebook Q&A Jeremy mentions visit: https://alsadotorg.wordpress.com/2020/03/23/questions-and-answers-about-covid-19-and-its-impact-on-people-with-als/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. 

In this episode Mike and Jeremy turn to Jennifer Hjelle, executive director of The ALS Association Minnesota/North Dakota/South Dakota Chapter to facilitate a conversation about COVID-19 with Dr. Neil Thakur, Executive Vice President of Mission Strategy at The ALS Association, Dr. Lou Libby, a pulmonologist with the Providence ALS Center in Eugene, Oregon, and Kim Maginnis, Senior Vice President of Care Services at The ALS Association. 

If you have immediate questions or urgent matters please contact your local chapter. 

You can also send an e-mail to [email protected] 

Links:
Lou Libby: http://www.alsa.org/about-us/leadership/board-of-trustees/lou-libby.html
Neil Thakur: http://www.alsa.org/about-us/leadership/national-staff/neil-thakur.html
Kim Maginnis: http://www.alsa.org/about-us/leadership/national-staff/kimberly-maginnis.html
COVID-19 statement: https://alsadotorg.wordpress.com/2020/03/17/march-17-update-from-als-association-president-and-ceo-calaneet-balas/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. 

In this episode Mike and Jeremy are joined by Dr. Neil Thakur, Executive Vice President of Mission Strategy at The ALS Association, and Mark Calmes, Vice Chair of The ALS Association's Board of Trustees, for updates on helping people living with ALS and their caregivers live longer, better lives. For resources available to people with ALS and caregivers,  visit http://www.alsa.org/als-care/.

For more information about the Jane Calmes ALS Scholarship Fund that Neil mentions in the interview please visit: http://www.alsa.org/fight-als/calmes-als-scholarship-fund/

For more information on our guests and further resource guides please visit the following links: 

Neil’s bio: http://www.alsa.org/about-us/leadership/national-staff/neil-thakur.html

Mark’s bio: http://www.alsa.org/about-us/leadership/board-of-trustees/mark-calmes.html

Living with ALS Resource Guides: http://www.alsa.org/als-care/resources/publications-videos/resource-guides/

Families and ALS Resource Guides: http://www.alsa.org/als-care/resources/publications-videos/families-and-als-resource-guide/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. 

This episode is the first in our new weekly format and hosts Mike and Jeremy were joined by Dr. Kuldip Dave, Vice President of Research at The ALS Association, and Dr. Eugene Brandon, Chair of The ALS Association's Research Committee, for a deep dive on ALS research. For more information on The ALS Association's research program and to download the research toolkit, visit als.org/research.

To learn more about the research we fund visit: http://www.alsa.org/research/research-we-fund/

To learn more about Dr. Brandon visit: http://www.alsa.org/about-us/leadership/board-of-trustees/eugene-brandon.html

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. 

This month we talk with Clay and Jana Ahrens about parenting while living with ALS and take a moment with Don and David who share what support group has meant to them and the importance of levity in their friendship.

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

As part of our ongoing ‘A Moment With...’ series, we recently sat down with Sarah Martin. Sarah’s mother Linda Griffiths died of ALS in June of last year, and as she continues to grieve the loss, Sarah wanted to tell the story of one of the simple joys in her mom’s life, and how that has encouraged her to carry on Linda’s spirit of generosity…

This is her story.

For full episodes of Connecting ALS, be sure to visit ConnectingALS.org or find us wherever you get your podcasts.

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Episode nine takes an in-depth look at ALS Research and the therapy development process with Dr. Jill Yersak, Senior Director of Mission Strategy at The ALS Association. Dr. Yersak discusses promising potential treatments in the pipeline (including NurOwn) and provides excellent insight into the FDA's approval process. Our conversation concludes with information about an upcoming feedback and data collection initiative called ALS Focus, which you'll be hearing more about in the near future. 

Dr. Yersak mentions a few valuable resources during the episode, including; the official ALS Association Blog, the National ALS Registry, and a place where you can direct questions about research and anything else related to ALS — [email protected]

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This week Pete Frates died at the age of 34, seven years after his ALS diagnosis. Pete altered the landscape of ALS so greatly, we felt it was necessary to take a few minutes to discuss his impact. In this brief discussion with our Chapter’s Executive Director, Jennifer Hjelle, we talk about Pete’s legacy and the massive impact he had on the ALS community. Read more about his life and legacy at https://alsadotorg.wordpress.com/2019/12/09/remembering-pete-frates-co-founder-of-the-als-ice-bucket-challenge/

This segment is excerpted from episode 8. Find the full episode in your favorite podcast app or on our site at: https://www.connectingals.org/episodes/remembering-pete-frates-preparing-for-the-holidays-and-a-moment-with-jan

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

For December we’re focusing on how we celebrate the holidays and support those living with ALS. We connected with Anne Supplee, our in-house expert, to discuss family gatherings and how to communicate with loved ones. We also continue our recurring segment "A Moment With..." This time we took some time with the Nepsund family from Osseo, MN. Jan was diagnosed with ALS in June of 2018, and she and her daughter in-law, Dawn, talked about the importance of their family holiday gatherings and what it’s been like to transition responsibilities as Jan has needed more help. Laura Winterstein wraps up this episode by talking with us about the resource ALS Care Connection and how it can help families living with ALS. 

The beginning of the podcast features a brief remembrance of Pete Frates, who died this week, seven years after his ALS diagnosis. Chapter Executive Director, Jennifer Hjelle, touched on the massive impact Pete had on the ALS community. Read more about his life and legacy at https://alsadotorg.wordpress.com/2019/12/09/remembering-pete-frates-co-founder-of-the-als-ice-bucket-challenge/

For more information about ALS Care Connection visit: https://alsa.lotsahelpinghands.com/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Last month we introduced a recurring segment called "A Moment With..." These are meant to be short stories that give us a glimpse into living with ALS through moments of inspiration and joy. They will always be at the end of a full episode so we wanted to share November's story as a bonus in cased you missed it.

Find a transcript of this episode and examples of John's work on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.