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

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-veteransFind 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. 

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-everywhereFor 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-caregiversFind 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. 

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

This week, Mike and Jeremy talk to Dr. Sabrina Paganoni, co-director of MGH Neurological Clinical Research Institute and principal investigator of the CENTAUR trial evaluating the effects of Amylyx Pharmaceutical’s AMX0035 on people living with ALS. Dr. Paganoni explains the results of that study, which were published in the October edition of Muscle and Nerve, and why the survivability data creates a new sense of hope in the search for treatments and a cure.To read more about the results of the off-label extension study, go to https://www.als.org/stories-news/amx0035-survivability-dataTo learn more about Dr. Paganoni’s research, check out https://www.massgeneral.org/doctors/19426/sabrina-paganoniFor a deeper dive into the survivability data, watch this webinar https://www.neals.org/for-people-with-als-caregivers/educational-webinars/long-term-survival-of-participants-in-the-centaur-trialTo keep the momentum going, sign and share the petition at als.org/petitionFind 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. 

On this week's episode we welcome in the hosts of the podcast Born 2 Battle, Chris Beckette and Nathaniel Palone, to discuss the origin of their show and their plans to continue raising awareness for ALS. You can find Born 2 Battle wherever you listen to podcasts or directly on Chris' website, https://www.beckettesbattle.com/  To learn more about Chris' ALS story:https://www.youtube.com/watch?v=1JT-Y3wgPuI&feature=emb_titleFind 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. 

For this week's episode, Jeremy and Mike welcome voting rights expert, Dara Baldwin, Director of National Policy for the Center for Disability Rights, to discuss how to vote during a pandemic and what to consider if you're facing mobility and motor function challenges. To get help registering to vote or to find more information about voting in your state, you can call the Election Protection Hotline at 866.687.8683. Or visit their website at at: https://866ourvote.org/You can also find additional, state-specific voting information at your state's Secretary of State website. To learn more about the Center for Disability rights, visit:http://cdrnys.org/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. 

To kick off National Physical Therapy Month, Mike and Jeremy are joined by Dr. Shannon Terrell, a physical therapist at Kaiser Permanente Skyline Medical Offices in Colorado. Dr. Terrell lays out the role a physical therapist plays in an ALS clinical environment and discusses how the practice is embracing expanded access to telemedicine.For more information about improving go to https://www.als.org/navigating-als/living-with-als/therapies-care/how-to-improve-mobilityFor a deeper dive on navigating mobility while living with ALS, read https://www.als.org/navigating-als/resources/fyi-mobility-and-alsFind 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. 

This week, Mike and Jeremy chat with ALS advocate Sunny Brous, who shares how she finds hope and maintains connections during what has been a rollercoaster of a year. To learn more about Sunny's journey, visit her website at https://sunnystrong.com/And follow her on Instagram @sunnystrongals 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. 

This week, Mike and Jeremy are joined by Donnie Graham and Jan Steinbock, who tell us how they are facing wildfires and a global pandemic with ALS.For more information about natural disaster preparedness, read https://www.als.org/stories-news/hurricane-season-starts-today-are-you-prepared-for-an-emergencyFor help building your own emergency preparedness plan, check out https://www.als.org/navigating-als/resources/fyi-emergency-preparedness-people-alsFind 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. 

This week, Mike and Jeremy continue the discussion around Amylyx Pharmaceutical’s phase 2 clinical trial results of AMX0035, which was shown to slow down progression of ALS in trial participants. They are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to gain insight into how AMX0035 fits into the broader context of the ALS research landscape. They then are joined by two leaders from the ALS community, Sandy Morris and Tommy May, who share their thoughts on  why this gives the community hope, and how the petition to expedite access to AMX0035 illustrates the level of urgency in the fight.For more information on how AMX0035 works and why it’s inspiring so much home, read https://www.als.org/stories-news/als-association-i-am-als-call-amylyx-fda-make-promising-new-drug-available-our-alsTo sign and the petition calling on Amylyx Pharmaceuticals and FDA to expedite access to AMX0035 go to https://als.quorum.us/campaign/28538/To read about Tommy May’s work to protect access to noninvasive ventilators, check out https://www.als.org/stories-news/als-association-board-member-urges-congress-protect-right-breatheTo read more about Sandy’s story, read https://iamals.org/stories/sandy-morris/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. 

This week, Mike and Jeremy dig into the latest development out of Amylyx Pharmaceuticals, which recently announced findings of a phase 2 clinical trial of AMX0035, a drug compound shown to be safe and clinically effective at slowing down disease progression. They are joined by Dr. Neil Thakur, Chief of Mission at The ALS Association, and Dr. Jinsy Andrews, the Director of Neuromuscular Clinical Trials at Columbia University's Irving Medical Center and a member of The ALS Association’s Board of Trustees to discuss the safety and effectiveness of AMX0035 and how to work with Amylyx and the FDA to make this drug available to people living with ALS as soon as possible.Join The ALS Association and Northeast ALS Consortium (NEALS) on Friday at 3p ET for an informative webinar. Register here: https://bit.ly/3gVlpG5Read more about the AMX0035 trial here: https://www.nejm.org/doi/full/10.1056/NEJMoa1916945? Sign the petition calling on Amylyx and the FDA to expedite access to AMX0035 here: https://als.quorum.us/campaign/28538/ Learn more about The ALS Association’s work to make sure people with ALS have access to AMX0035 as quickly as possible here: https://www.als.org/stories-news/als-association-i-am-als-call-amylyx-fda-make-promising-new-drug-available-our-alsFind 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. 

This week, Mike and Jeremy discuss what back-to-school means in 2020 for families impacted by ALS. They chatted with the Rudin brothers, Eli and Liam, both recipients of The Jane Calmes ALS Scholarship, about what college looks like during a pandemic and resources that are available to students in their situation. Learn more about The Jane Calmes Scholarship fund: https://www.als.org/get-involved/jane-calmes-als-scholarship-fundFind 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. 

This week, Mike and Jeremy turn their focus to ALS Focus, a survey platform that brings the needs and perspectives of people living with ALS to the center of our fight. They are joined by Dr. Sarah Parvanta, director of ALS Focus, and John Robinson and Lora Pollari-Welbes, two members of the ALS Focus advisory committee, to walk us through what we learned from the first survey and how listeners can get involved.To learn more about ALS Focus, go to https://www.neuroserver.org/als-focus/Home/wiafTo participate in future ALS Focus surveys, check out https://www.neuroserver.org/als-focus/Home/loginRead more about the results of the first ALS Focus survey here https://www.als.org/stories-news/als-focus-survey-1-key-findings-show-high-financial-burden-als-communityCheck out bios for the ALS Focus Patient and Caregiver Advisory Committee here https://www.als.org/als-focus/als-focus-structureFind 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. 

This week, Mike and Jeremy hear from Dr. Elijah Stommel, a neurologist at Dartmouth-Hitchcock Health and a professor of neurology at the Geisel School of Medicine at Dartmouth. Dr. Stommel walks us through the connection between exposure to blue-green algae toxins and development of ALS, and provides insight on continuing to do ALS research during the COVID-19 pandemic.For more information on Dr. Stommel, check out https://www.dartmouth-hitchcock.org/findaprovider/provider/192/Elijah-W-StommelLearn more about Dr. Stommel’s work on blue-green algae here: https://www.als.org/research/research-we-fund/funded-grantsCheck out this Q&A with Dr. Stommel about environmental risk factors: https://geiselmed.dartmouth.edu/news/2016/link-between-environmental-toxin-and-als-grows-stronger/For more information on enrollment in the Healey ALS Platform Trial, read https://www.als.org/stories-news/healey-als-platform-trial-enrolls-first-participantsFind 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. 

On this week’s episode, Mike and Jeremy talk to Dr. Lauren Laboissonniere, a neuroscientist at the Ranum Lab at the University of Florida and a recipient of The ALS Association’s Milton Safenowitz Postdoctoral Fellowship. Dr. Laboissonniere discusses her research developing novel therapies targeting C9orf72 ALS, how her research continues despite the COVID-19 pandemic, and what inspired her at a young age to study ALS.To learn more about Dr. Laboissonniere’s research, check out https://www.als.org/stories-news/researcher-spotlight-lauren-laboissonniereFor more information about the Milton Safenowitz Postdoctoral Fellowship Program, go to https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-programRead more about the Ranum Lab at the University of Florida here: https://neurogenetics.med.ufl.edu/faculty/dr-laura-p-w-ranum/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. 

On this week’s episode, Mike and Jeremy get ready for National Wellness Month by checking in with Dr. Ellen Langer, a social psychologist at Harvard known as the mother of mindfulness. Dr. Langer discusses the power of living in the present and how to practice mindfulness while dealing with ALS.Learn more about Dr. Langer here: https://www.ellenlanger.com/about/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. 

On this week’s episode, Mike and Jeremy talk to Lorri Carey, a veteran leader in the fight against ALS and host of the podcast “I’m Dying to Tell You.” Lorri talks about her 16-year journey with ALS, all the many ways she serves the community, the sense of urgency she sees in the ALS community today, and where she finds time to put her extraordinary podcast together.To listen to “I’m Dying to Tell You,” go to https://imdyingtotellyoupodcast.com/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. 

This week, Mike and Jeremy bring in an expert to help cover a topic that isn’t always easy to discuss in a clinical setting; intimacy and ALS. Dr. Alair Altiero is a mental health professional who works in the ALS clinic at the Hershey Medical Center in Pennsylvania. Her experience in addressing issues related to both physical and emotional intimacy with couples facing ALS carries a robust discussion around a sensitive subject. Quick note, this episode does feature some adult content as we are covering the topic of intimacy.To learn more about Dr. Altiero and her work, visit:http://webpa.alsa.org/site/PageNavigator/PA_Chapter/Hershey_Clinic/PA_8_profile_3.html  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.