Connecting ALS

This week, to commemorate Malnutrition Awareness Week, Jeremy is joined by Stephanie Dobak, a clinical dietician at the Jefferson Weinberg ALS Center, to discuss ways to avoid malnutrition while living with ALS or caring for a person with ALS.

For more information about maintaining good nutrition while living with ALS, check out https://www.als.org/navigating-als/living-with-als/therapies-care/nutrition-feeding-tubes

For some easy chew, easy swallow recipes, go to https://www.als.org/blog/easy-chew-easy-swallow-recipes-help-celebrate-holidays

Learn more about feeding tubes at https://www.als.org/navigating-als/resources/fyi-information-about-feeding-tubes

Results of the ALS Focus survey on caregivers can be found at https://www.als.org/research/als-focus/survey-results/survey-3-results

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jessica and Jeremy are joined by Dr. Suma Babu, assistant professor of neurology at Harvard Medical School and a member of The ALS Association’s Time to Diagnosis Working Group to discuss thinkALS, a new diagnostic guide built to help medical professionals shorten the time it takes to confirm an ALS diagnosis.

To read more about thinkALS, go to https://www.als.org/stories-news/als-association-creates-thinkals-tool-help-doctors-speed-diagnosis-process

Meet the Time to Diagnosis working group at https://www.als.org/thinkals/als-association-time-diagnosis-working-group-members

Learn more about the benefits of a timely diagnosis at https://www.als.org/thinkals/benefits-timely-diagnosis

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy and Jessica celebrate Telehealth Awareness Week with Kyle Zebley, Vice President of Public Policy at the American Telemedicine Association, who reminds us: Telehealth is health.

Learn more about the work being done to protect access to telehealth at https://www.als.org/stories-news/expand-telehealth-access-permanently

Become an advocate and join the fight for access to telehealth at https://als.quorum.us/register/

Find out more about the American Telemedicine Association at https://www.americantelemed.org/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy and Jessica talk to the team at Amylyx to discuss their recent announcement that the company intends to submit a New Drug Application for AMX0035 and the path ahead to make sure the drug is available as soon as possible.

Learn more about The ALS Association’s support for the development of AMX0035 at https://www.als.org/stories-news/als-association-applauds-amylyxs-amx0035-announcement-urges-swift-fda-approval

Learn how the case of AMX0035 proves advocacy from the ALS community can impact drug development at https://www.als.org/blog/case-amx0035-proves-advocacy-als-community-can-impact-drug-development

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jessica and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, and Michael Trainor, a member of the ALS Focus Patient and Caregiver Advisory Committee. Dr. Parvanta and Michael discuss the recent findings from the second ALS Focus survey, which focused on the needs of caregivers.

To learn more about the ALS Focus program, go to https://www.als.org/research/als-focus

Sign up to participate in ALS Focus at https://www.als.org/research/als-focus/als-focus-registration-instructions

Check out the results of earlier ALS Focus surveys at https://www.als.org/research/als-focus/survey-results

Find resources for caregivers at https://www.als.org/navigating-als/for-caregivers

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 Ally Halverson and Emma Thompson, two recipients of the Jane Calmes ALS Scholarship Fund. Ally and Emma talk about their connection with ALS and how their scholarships are helping them overcome the financial burden of ALS and pursue education and careers focused on caring for others.

To learn more about the Jane Calmes ALS Scholarship fund, go to 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, Jessica and Jeremy are joined by Dr. Jeffrey Rothstein, professor of neurology and neuroscience and the founding director of the Robert Packard Center for ALS Research at Johns Hopkins University School of Medicine, and Dr. Alyssa Coyne, a postdoctoral fellow at Johns Hopkins. Drs. Rothstein and Coyne discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.

To read more about the role CHMP7 accumulation plays in cell degradation go to https://www.nih.gov/news-events/news-releases/researchers-identify-cellular-defect-common-familial-sporadic-forms-als

Learn more Dr. Coyne’s research at https://www.als.org/blog/meet-alyssa-coyne-2018-milton-safenowitz-postdoctoral-fellow

Learn more about The ALS Association’s Milton Safenowitz Postdoctoral Fellowship Program at https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program

Dive deeper into the impact of the Milton Safenowitz Postdoctoral Fellowship Program at https://www.connectingals.org/episodes/recruiting-new-researchers-to-the-search-for-treatments

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 Lori Banker-Horner, director of clinical programs at The ALS Association, to discuss a new partnership with the U.S. Department of Veterans Affairs to expand access to multidisciplinary care, and the work being done to optimize care.

For more information on the partnership between the Association and the VA, go to https://www.als.org/blog/als-association-partners-veterans-administration-improve-lives-veterans-living-als

To learn more about The ALS Association’s clinical network, go to https://www.als.org/local-support/certified-centers-clinics

Find out more about the connection between military service and ALS at https://www.als.org/navigating-als/military-veterans

For the latest from the CDC on COVID, go to https://www.cdc.gov/coronavirus/2019-ncov/index.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's episode is a replay of one of our favorites from 2020; 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, Jeremy and Jessica are joined by Dr. Neil Thakur, chief mission officer for The ALS Association, and Abram Bieliauskas, associate director of government affairs for the Association. Dr. Thakur and Abram reflect on a recent congressional subcommittee hearing focused on advancing treatments and cures for neurodegenerative diseases and where the fight goes from here.

To read more about the hearing go to https://www.als.org/blog/als-community-pleas-congress-faster-more-responsive-fda

To watch the hearing in its entirety go to https://www.als.org/blog/als-community-pleas-congress-faster-more-responsive-fda

To view past webinars go to https://www.als.org/research/research-media/research-webinars

Become an advocate at https://als.quorum.us/register/

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.