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Connecting ALS

Health & Wellness Podcasts

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

Location:

St. Paul, MN

Description:

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

Language:

English

Contact:

6124552558


Episodes

"Genetic Counseling and Testing…"

10/21/2021
This week, Jeremy is joined by guest co-host Dr. Jill Yersak, vice president of mission strategy at The ALS Association, to discuss the benefits of genetic counseling and the potential benefits of genetic testing for people living with ALS. Jeremy also talks to Ellie Harrington, a certified genetics counselor at the Eleanor and Lou Gehrig ALS Center at Columbia University Medical Center, to learn more about some of the common questions that are answered in a genetic counseling...

Duration:00:26:59

"Medicare Open Enrollment…"

10/14/2021
This week, Jeremy is joined by Dr. Neil Thakur, chief mission officer at The ALS Association, to talk about the efforts to make sure Medicare works for people living with ALS, and talks to Courtney Jones at the Patient Advocate Foundation about navigating the Medicare open enrollment period. Access the Medicare resource line at https://www.als.org/navigating-als/financial-information/medicare-information/als-medicare-resource-line To learn more about Medicare go to...

Duration:00:21:12

"Maintaining Good Nutrition..."

10/7/2021
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...

Duration:00:21:51

"Reducing Time to Diagnosis…"

9/30/2021
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...

Duration:00:21:26

"Where the Fight to Protect Access to Telehealth Goes Next…"

9/23/2021
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...

Duration:00:28:14

"Fight for AMX0035 Approval Moves Forward With Amylyx NDA Announcement..."

9/16/2021
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...

Duration:00:22:22

"Finding Ways to Reduce Caregiver Burden and Harms…"

9/9/2021
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...

Duration:00:41:31

"Helping Students Affected By ALS Overcome Financial Hardships…"

9/2/2021
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...

Duration:00:38:07

"Identifying an Earlier Domino in Cellular Breakdown Connected to ALS…"

8/26/2021
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...

Duration:00:21:43

"Optimizing Care Through A New Partnership With VA…"

8/19/2021
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...

Duration:00:18:50

"Living With ALS When A Natural Disaster Hits…" [Replay]

8/12/2021
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...

Duration:00:35:43

"Taking the Fight Against ALS to the Halls of Congress…"

8/5/2021
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...

Duration:00:29:22

"Midyear Checkup on the Fight Against ALS…"

7/29/2021
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...

Duration:00:19:40

"Summer Vacation and ALS…"

7/22/2021
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...

Duration:00:42:54

"Drawing Inspiration from Eddie Ilarazza…"

7/15/2021
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...

Duration:00:09:28

"Recruiting New Researchers to the Search for Treatments…"

7/8/2021
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...

Duration:00:22:29

"Recent Developments on Drug Development at FDA…"

7/1/2021
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...

Duration:00:21:07

"Checking in on the Global Fight Against ALS..."

6/24/2021
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...

Duration:00:12:44

"Health Care Disparities and ALS…"

6/17/2021
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...

Duration:00:18:19

"Making ALS A Livable Disease By Finding New Treatments…"

6/10/2021
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...

Duration:00:20:59