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Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
 
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This week, Mike and Jeremy talk to Senator Sheldon Whitehouse of Rhode Island to look back on the passage of the ALS Disability Insurance Access Act, which ended the five-month waiting period for people with ALS to access Social Security Disability Insurance. To learn more about the role ALS advocates played in getting the ALS Disability Insurance …
 
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.c…
 
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…
 
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…
 
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. …
 
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,…
 
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/strength…
 
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 b…
 
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/jo…
 
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…
 
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/ Chec…
 
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 Musc…
 
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 Ch…
 
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 i…
 
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 br…
 
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 prepa…
 
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 t…
 
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 …
 
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 S…
 
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 …
 
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 …
 
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 t…
 
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.ellenla…
 
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 extraordinar…
 
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 intimac…
 
This week, Mike and Jeremy talk to Dr. Richard Bedlack, director of the Duke ALS Clinic and head of ALSUntangled, about a recent paper he co-authored laying out common red-flags patients need to know about when considering off-label treatments. Dr. Bedlack also weighs in on the ways technology adoption during the Covid-19 pandemic could change the …
 
This week, Mike and Jeremy commemorate Global ALS/MND Awareness Day with members of the International Alliance of ALS/MND Associations and get an update on the fight against ALS motor neurone diseases around the world. They are joined by a powerhouse lineup of guest who are leading our fight: Catherine Cummings, executive director of the Internatio…
 
On this week’s episode, Mike and Jeremy talk to Larry Falivena, a member of The ALS Association’s national board of trustees. Larry’s shares his memories from his 2019 tour of Major League Baseball stadiums to raise awareness of ALS, his thoughts on Lou Gehrig’s birthday and why the Iron Horse continues to inspire people today, and how Father’s Day…
 
This week, Mike and Jeremy talk to Dr. Ralph Kern, president and chief medical officer at BrainStorm Cell Therapeutics, and Dr. Kuldip Dave, vice president of research at The ALS Association. Drs. Kern and Dave discuss The ALS Association’s partnership with I AM ALS to provide a $500,000 grant to BrainStorm to study biomarkers during BrainStorm’s o…
 
On today’s episode, Mike and Jeremy talk to three families living with ALS, 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-co…
 
On this week’s episode, Mike and Jeremy talk to Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital and director of the Sean M. Healey & AMG Center for ALS, about the impact of COVID-19 on conducting clinical trials. Dr. Cudkowicz also provides an update on the Healey Platform Trial and potential long-term changes to trial des…
 
This week, Mike and Jeremy talk to Dr. Melinda Kavanaugh, a clinical social worker and associate professor at the University of Wisconsin-Milwaukee, about the impact ALS has on kids, teenagers, and young adults. Dr. Kavanaugh discusses her research talking to kids about the roles they play as caregivers and ways to empower children in families affe…
 
This week, Mike and Jeremy talk to Betsy McCormick and Maya Bulmer about how their family is adjusting to life since Betsy was diagnosed with ALS in 2019, their Mother’s Day plans, and how they developed a new mother-daughter tradition. For more on Maya and Betsy’s story, check out https://alsadotorg.wordpress.com/2019/11/08/maya-bulmer-today-is-wh…
 
This week, Mike and Jeremy talk to Mark Calmes, vice chair of The ALS Association Board of Trustees, about the Jane Calmes ALS Scholarship Fund, which is currently accepting applications from people affected by ALS who wish to pursue college degrees or vocational certificates. Last year, the scholarship fund awarded $225,000 to 45 students across t…
 
May 10 is Mother's Day, so after you call the florist and get flowers ordered, grab your phone and share a reflection about moms and ALS. Simply record it using a voice memo app on your phone and e-mail it to connectingals@alsmn.org. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May …
 
This week, Mike and Jeremy celebrate National Volunteer Week by exploring some of the creative ways volunteers are continuing to serve the community despite the challenges of social distancing and some of the long-term trends in volunteering. They are joined by Sarah Lettow, engagement coordinator for The ALS Association Iowa Chapter, and Dr. Natha…
 
On this episode, Mike and Jeremy talk to Dr. Barron Lerner, a medical doctor and director of the undergraduate bioethics curriculum at New York University’s Langone Health, and Dr. Neil Thakur, chief mission officer at The ALS Association. The conversation covers health care scarcity and rationing during the COVID-19 pandemic, historical examples o…
 
Welcome to Connecting ALS. In this episode we talk to Dr. Manish Raisinghani, president and CEO of Target ALS, about conducting research during the COVID-19 pandemic, the recent kick off of a collaboration with The ALS Association to look for biomarkers, and the important role of collaboration in ALS research. For more information on Target ALS vis…
 
On this episode of Connecting ALS, Mike and Jeremy talk to Lauren Tabor Gray, Ph.D., CCC-SLP, a clinical researcher and speech pathologist and co-director of the Phil Smith Neuroscience Institute in Ft. Lauderdale, Florida. Dr. Gray discusses the increasing use of telehealth to treat patients in a time of extreme social distancing brought on by the…
 
In this bonus episode, we check-in with Calaneet Balas, President and CEO of The ALS Association, to discuss the impact of the ongoing pandemic on the ALS community. If you have questions about the COVID-19 pandemic or how The ALS Association is continuing to pursue its mission, please email questions@alsa-national.org. Find your local chapter cont…
 
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 Ass…
 
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,…
 
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 careg…
 
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…
 
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 Connect…
 
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…
 
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 wi…
 
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 co…
 
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 wa…
 
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