Connecting ALS

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-Stommel

Learn more about Dr. Stommel’s work on blue-green algae here: https://www.als.org/research/research-we-fund/funded-grants

Check 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-participants

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-laboissonniere

For more information about the Milton Safenowitz Postdoctoral Fellowship Program, go to https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program

Read more about the Ranum Lab at the University of Florida here: https://neurogenetics.med.ufl.edu/faculty/dr-laura-p-w-ranum/

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/

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/

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 

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. 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 future of medicine.

To learn more about the off-label red flags, go to https://www.als.org/stories-news/how-avoid-misleading-claims-about-label-prescription-drug-use

For a deeper dive on the red flags identified by ALSUntangled, check out https://www.tandfonline.com/doi/pdf/10.1080/21678421.2020.1765518?needAccess=true&

To revisit Dr. Bedlack’s earlier appearance on Connecting ALS click https://www.connectingals.org/episodes/alsuntangled-and-a-listening-tour

Learn more about the important work being done by ALSUntangled at http://www.alsuntangled.com/

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 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 International Alliance, Gethin Thomas, executive director of research for MND Australia, and Nick Goldup, director of care improvement at the MND Association of England, Wales and Northern Ireland and a board member of the International Alliance. Also joining the discussion and setting the stage is Calaneet Balas, president and CEO of The ALS Association and board chair of the International Alliance.

Learn more about the International Alliance of ALS/MND Associations, go to https://www.alsmndalliance.org/

To learn more about MND Australia, check out https://www.mndaust.asn.au/Home

To read about the MND Association of England, Wales and Northern Ireland go to https://www.mndassociation.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. 

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 has changed since Larry’s 2017 diagnosis with ALS.

To read more about the legacy of Lou Gehrig’s farewell speech, check out https://www.als.org/stories-news/legacy-lou-gehrigs-farewell-speech 

You can read the transcript of Lou Gehrig’s farewell speech here https://www.lougehrig.com/farewell/

For more information about Larry’s MLB tour, go to https://www.facebook.com/larrychallengealsmlbtour/?ref=aymt_homepage_panel&eid=ARBessBHYDlR89L5u_XCdz_vVi_6WGzrpMS_Lq54d9loUydfQJmpj5Kuyugg_wf8N4Fcb920bKPTkqQR

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. 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 ongoing phase 3 clinical trial of NurOwn.

To learn more about the partnership to fund biomarker research read http://www.alsa.org/news/media/press-releases/The-ALS-Association-I-AM-ALS-Award-BrainStorm-Cell-Therapeutics-for-ALS-Biomarker-Study.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. 

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-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.