Connecting ALS

This week, Jeremy and Jessica are joined by Calaneet Balas, president and CEO of The ALS Association. Calaneet provides an update on the progress made in the fight during the first half of 2021 and discusses what it will take to push the fight forward into the future.

Learn more about the successes from the first half of 2021 at https://www.als.org/2021-mid-year-report

For more on the power of one team on one mission to create one world without ALS, go to https://www.als.org/blog/what-it-takes

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. 

With summer travel season in full bloom, Jeremy and Jessica revisit a conversation around overcoming the challenges of living with ALS.

For the latest guidance from the CDC on traveling during COVID, go to https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html

For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf

To know more about Jeremy Van Tress, check out https://www.waldenu.edu/programs/resource/walden-military-pride-meet-jeremy-van-tress

Learn more about Accessible Go at https://accessiblego.com/home

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, Jeremy and Jessica share the inspiring story of Eddie Ilarazza, an author and social worker who was diagnosed with ALS in 2002 and who talks about fulfilling his dreams, his commitment to serving others and how he is making his community a better place.

Read more about Eddie’s story at https://www.als.org/blog/eddie-ilarraza-doing-whatever-it-takes-make-his-dreams-come-true

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, Jeremy and Jessica are joined by Dr. Jill Yersak, vice president of mission strategy for The ALS Association, to discuss efforts to bring new researchers into the field to speed up the search for treatments and a cure.

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

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, Jeremy and Jessica are joined by Dr. Neil Thakur, chief mission officer of The ALS Association, for an update on the continued fight to get the FDA to move more quickly in approving promising drugs for the treatment of ALS. Dr. Thakur discusses the agency’s recent decision to grant accelerated approval for Aduhlem, the first new drug approved for the treatment of Alzheimer’s disease and recent statements made by leaders of the FDA on the drug approval process.

To read ALS Association CEO Calaneet Balas’s recent column on the FDA’s approval process go to https://www.statnews.com/2021/06/22/canada-europe-shouldnt-lead-way-new-als-treatments/

Read Sen. Mike Braun’s (R-Ind.) analysis of the need to make sure FDA has all the tools it needs to be get promising drugs to the market more quickly at https://www.washingtontimes.com/news/2021/jun/29/promising-therapies-for-terminal-patients-advance-/

To learn more about the FDA’s decision to approve Aduhlem, go to https://www.statnews.com/2021/06/29/biogen-fda-alzheimers-drug-approval-aduhelm-project-onyx/

July 4 is the anniversary of Lou Gehrig’s famous speech. Learn more about Lou’s legacy at https://www.als.org/understanding-als/lou-gehrig

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, Jessica and Jeremy are joined by Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, to discuss Global ALS/MND Awareness Day and the work that is being done all over the world in the fight against ALS. 

For information on the Global Day of ALS/MND Awareness go to https://www.alsmndalliance.org/global-day/

To learn more about how we are going Whatever It Takes to create a world without ALS, go to https://www.als.org/whatever-it-takes

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, Jeremy and Jessica are joined by Dr. Michael Cartwright, a professor of neurology at Wake Forest School of Medicine and a neurologist at Wake Forest Baptist Health. Dr. Cartwright, co-author of a study on racial differences in ALS interventions, talks about some of the racial disparities research has uncovered in the ALS journey and the need for more research to understand why.

To learn more about the paper Dr. Cartwright co-authored, go to https://n.neurology.org/content/92/17/e1969

For additional research on racial disparities in the diagnosis and treatment of ALS, check out https://journals.lww.com/neurotodayonline/Fulltext/2021/02040/Black_Patients_with_ALS_Face_Significant.3.aspx

For a deeper dive into racial disparities in the health care system, go to https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

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, Jeremy and Jessica are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to dig into the path toward making ALS a livable disease with a focus on the search for new treatments and research breakthroughs that can help people live longer, improve quality of life and prevent loved one from getting ALS.

To learn more about doing whatever it takes to make ALS a livable disease, go to https://www.als.org/whatever-it-takes

Find more information about the research currently being funded by The ALS Association at https://www.als.org/research/research-we-fund

Read up on The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

For more information on the ALS Focus survey program, check out https://www.als.org/research/als-focus

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, Jeremy is joined by co-host Jessica Chapman to get an update on all the work being done to speed up the process of getting promising new treatments to people with ALS. They turn to Abram Bieliauskas, associate director of government affairs for The ALS Association, and Dave Zook, a consultant for the Association. Dave and Abram reflect on the recent We Can’t Wait Action Meeting with the FDA and lay out two promising bills recently reintroduced in Congress – the Promising Pathways Act and ACT for ALS.

It’s not too late to register for the 2021 virtual advocacy conference: http://www.alsadvocacyconf.org/

To learn more about the fight to expand access to promising treatments go to https://www.als.org/advocacy/we-cant-wait

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

Find out more information about The ALS Association’s public policy 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 Jeremy is joined by co-host Jessica Chapman to talk with Larry Falivena, a member of The ALS Association Board of Trustees and a speaker at the We Can’t Wait Action Meeting with the FDA. Larry reflects on the meeting and where the fight for access to promising treatments goes from here.

To watch the We Can’t Wait Action Meeting in full, go to https://www.als.org/advocacy/we-cant-wait

To learn more about the next steps in the fight go to https://www.als.org/blog/we-cant-wait-action-meeting-fda-what-we-heard-and-whats-follow

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.