Connecting ALS

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-data

To learn more about Dr. Paganoni’s research, check out https://www.massgeneral.org/doctors/19426/sabrina-paganoni

For 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-trial

To keep the momentum going, sign and share the petition at als.org/petition

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_title

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/

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-mobility

For a deeper dive on navigating mobility while living with ALS, read https://www.als.org/navigating-als/resources/fyi-mobility-and-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 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

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-emergency

For help building your own emergency preparedness plan, check out https://www.als.org/navigating-als/resources/fyi-emergency-preparedness-people-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 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-als

To 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-breathe

To read more about Sandy’s story, read https://iamals.org/stories/sandy-morris/

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/3gVlpG5

Read 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-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 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-fund

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/wiaf

To participate in future ALS Focus surveys, check out https://www.neuroserver.org/als-focus/Home/login

Read 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-community

Check out bios for the ALS Focus Patient and Caregiver Advisory Committee here https://www.als.org/als-focus/als-focus-structure

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.