Connecting ALS

This week's episode is a replay of one of our favorites from 2020; Mike and Jeremy talk to three families who share their experiences living with ALS during the COVID-19 pandemic and how they are managing social isolation and anxiety around the coronavirus.

For tips on managing stress during the COVID-19 outbreak read https://alsadotorg.wordpress.com/2020/05/26/continuing-to-cope-with-anxiety-and-stress-during-these-difficult-times/

For more information about coping with the “new normal” after an ALS diagnosis, check out The ALS Association’s resource guides http://www.alsa.org/als-care/resources/publications-videos/resource-guides/

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 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.

For more information on COVID-19 vaccines for people with ALS go to https://www.als.org/navigating-als/living-with-als/covid-vaccines

Learn more about The ALS Association’s certified centers and clinics at https://www.als.org/local-support/certified-centers-clinics

Check out resources available to people living with ALS at https://www.als.org/navigating-als

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 week, Mike and Jeremy 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.

Check out The ALS Association COVID-19 vaccine information hub at https://www.als.org/navigating-als/living-with-als/covid-vaccines

Sign up to become an advocate at https://als.quorum.us/register/

Keep track of the latest ALS Association advocacy priorities at https://www.als.org/advocacy/our-priorities

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 week, Mike and Jeremy are joined by Dr. Clifton Gooch, chair of the University of South Florida’s Department of Neurology and a member of The ALS Association’s national board of trustees. Dr. Gooch 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.

Learn more about Dr. Gooch at https://www.als.org/about-us/leadership/clifton-cliff-gooch-md

Read Dr. Gooch’s piece on the long-term impact of COVID-19 at https://www.tampabay.com/opinion/2020/11/18/the-covid-long-haulers-when-the-body-gets-better-but-the-brain-does-not-column/

Find out what the CDC says about the COVID-19 vaccine at https://www.cdc.gov/coronavirus/2019-ncov/vaccines/vaccine-benefits.html

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 week Mike and Jeremy 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.

For more information about research funded by The ALS Association, go to https://www.als.org/research

To reach out to your member of Congress about the ALS Disability Insurance Access Act check out https://als.quorum.us/campaign/ssdivote/

Learn more about the push to get AMX0035 to people with ALS as quickly as possible at https://www.als.org/stories-news/amx0035-petition-delivered-fda

Thanks to Jeremy’s dog, Sophie, for reminding us about the challenges and joys of home recording!

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 week, Mike and Jeremy 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.

To learn more about ACT for ALS, go to https://www.als.org/stories-news/strengthened-act-als-act

For more information on the need for more funding at ALSRP, check out https://www.als.org/advocacy/our-priorities

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 week, Mike and Jeremy honor Veteran’s Day by talking to John Hartwell, who reflects on his military service and living with ALS during a pandemic.

To learn more about the connection between military service and ALS, go to https://www.als.org/navigating-als/military-veterans

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 week, Mike and Jeremy kick off Family Caregivers Month with Grace Whiting, president and CEO of the National Alliance for Caregiving. Grace shares insight from the Alliance’s Caregiving in the U.S. 2020 report and reflects upon caregiving during the COVID-19 pandemic.

To learn more about ALS caregivers, read https://www.als.org/stories-news/join-us-celebration-als-caregivers-everywhere

For more information about the state of caregiving in America, read the National Alliance for Caregiving’s 2020 report here https://www.caregiving.org/caregiving-in-the-us-2020/

To find resources for caregivers, go to https://www.als.org/navigating-als/for-caregivers

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 week Mike and Jeremy 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. Dr. Libby, a member of The ALS Association’s national board of trustees, catches us up on the latest in respiratory health and the impact of the ongoing COVID-19 pandemic.

To learn more about Dr. Libby’s work in the fight against ALS, go to https://www.als.org/about-us/leadership/lou-libby-md

For more information about respiratory care for people with ALS, read https://www.als.org/navigating-als/resources/fyi-breathing-difficulties

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 the closing days of the 2020 election, Mike and Jeremy are joined by Lee Page, senior associate director of advocacy at Paralyzed Veterans of America, who provides guidance on casting in-person votes while dealing with mobility challenges and a global pandemic.

For more information about Paralyzed Veterans of America, go to https://pva.org/

Check out the CDC’s tips on voting during the COVID-19 pandemic here https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/going-out/voting-tips.html

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.