Best Citizenracecar Podcasts (2024)

1
Re-Release: A Conversation with Brooke Eby... 22:51

7M ago22:51

22:51

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. Today’s episode, which originally ran on July 23rd of this year, is a conversation between two of our favorite…

1
Re-Release: My ALS Journey... 11:56

8M ago11:56

11:56

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. In this episode, from May 25th of 2023, Jeremy spoke with Leslie Ryan, Senior Director of Education and Profes…

1
Re-Release: Advocacy in Action... 27:08

8M ago27:08

27:08

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. In this episode, which originally aired on June 9th, 2022, Jeremy talks to Dr. Neil Thakur, Chief Mission Offi…

1
Re-Release: The Genetics of ALS... 31:30

8M ago31:30

31:30

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. This episode, which first aired on February 16th 2023, is a conversation between host Jeremy Holden, ALS Assoc…

1
Re-release: Supporting Young Caregivers... 26:06

8M ago26:06

26:06

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. In this episode, which first aired on April 15th 2021, Sandra Sullivan, The ALS Association’s Director of Chap…

1
Re-release: Reducing the Harms of Traveling While Living with ALS... 32:39

9M ago32:39

32:39

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. In today’s episode, which first aired on August 4th, 2022, Jeremy talks to Maceo Carter and Heather Ansley fro…

1
Re-release: Family Caregivers Month... 38:05

9M ago38:05

38:05

In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. In today’s episode, which first aired on Nov 4 2021, Jeremy celebrates Family Caregivers’ Month with guest co-…

1
Action Plan Being Developed to Make ALS Livable… 20:11

12M ago20:11

20:11

This week, Jeremy welcomes Kathleen Sheehan, Vice President of Public Policy at The ALS Association, for an update on the National Academies of Sciences, Engineering, and Medicine Committee’s action plan to make ALS livable and to accelerate the search for treatments. Learn more about the NAS working group at https://www.nationalacademies.org/our-w…

1
Racial Disparities in Time to Diagnosis… 13:17

12M ago13:17

13:17

This week, Jeremy talks to Dr. Kelly Gwathmey, Chair of Neuromuscular Neurology at Virginia Commonwealth University, about recent research showing racial disparities in the time it takes to confirm an ALS diagnosis. Learn more about the research conducted at VCU at https://www.sciencedirect.com/science/article/pii/S0022510X20303919 For more informa…

1
Prioritizing Wellness While Living With ALS… 17:09

1y ago17:09

17:09

This week, Jeremy kicks off National Wellness Month with Melissa Enfinger from The ALS Association’s Care Services team. To participate in research into the mental health and wellness needs of people living with ALS, go to https://milwaukee.qualtrics.com/jfe/form/SV_4I9CXsunR8LrTYa This episode is brought to you by The ALS Association in partnershi…

1
Display Cake 31:58

1y ago31:58

31:58

In Undiscarded’s Season 1 finale, Tania sits down with author Richie Narvaez to discuss one very striking display cake. Adorned with a scantily clad doll, Xoxa, the cake graced the La Villita bakery in Williamsburg, Brooklyn. Unraveling the layers of gentrification, the two reflect on the neighborhood's transformation from a predominantly Puerto Ri…

1
A Conversation With Brooke Eby... 27:32

1y ago27:32

27:32

This week, Jeremy catches up with Brooke Eby, a social media influencer living with ALS, about her efforts to raise awareness of ALS and critical funding for ALS research, and how she uses levity and humor along the way. Find ways to follow Brooke’s journey at https://hoo.be/limpbroozkit Check out Brooke’s appearance on Today at https://www.today.c…

1
Navigating Barriers Used by Insurers to Restrict Access to Health Care… 31:48

1y ago31:48

31:48

This week, Jeremy explores some of the ongoing fights to make insurance work more effectively for people living with ALS. He is joined by Shannon Todd from The ALS Association’s Care Services team and ALS advocate Katie Adams, who updates us on her ongoing fight for insurance coverage of her power wheelchair. Learn more about Katie Adams’s story at…

1
Very Old Shovel 22:12

1y ago22:12

22:12

In this week's "Undiscarded," rock out with Tania and geologist Nik Sokol as they excavate the history of New York City's underground. With a meaningful artifact in hand—a very old shovel, discovered by Nik during the rehabilitation of the New Croton Aqueduct—they discuss the work of past generations to bring water to millions of inhabitants. Unvei…

1
Making Insurance Accessible for People Living with ALS… 24:17

1y ago24:17

24:17

This week Jeremy explores some of the barriers insurers establish that make it difficult to use insurance for essential health care needs, and talks to Kara Nett Hinkley, National Vice President of State Advocacy at The ALS Association, about some of the work being done to break down those barriers. Learn more about the ALS Focus results at https:/…

1
Subway Token 33:05

1y ago33:05

33:05

This week on "Undiscarded," join Tania and The Reliquary's Director of Outreach & Programming, Jacob Ford, as they uncover the history of the subway token and the transition into the digital realm. Discover the "SJD" token (which were the initials of one, Sylvester J. Dobosz), how these small, metallic discs transformed public transportation, and h…

1
Reflecting on Recent News… 35:36

1y ago35:36

35:36

This week, Jeremy reflects on some recent news in the ALS community and looks back on a discussion of the challenges of traveling while living with ALS. Read the National Geographic article on the ALS Ice Bucket Challenge at https://www.nationalgeographic.com/science/article/als-ice-bucket-challenge-research-impact Find the New Yorker article (pass…

1
Checking in on the Global Fight… 11:29

1y ago11:29

11:29

This week, Jeremy talks to Calaneet Balas, President and CEO of The ALS Association and Chair of the International Alliance of ALS/MND Association, about the state of the global fight against ALS. Learn more about the fundamental rights of people living with ALS/MND at https://www.als-mnd.org/support-for-pals-cals/pals-and-cals-rights/ This episode…

1
Latest Headlines in the Fight Against ALS… 20:04

1y ago20:04

20:04

This week, we look at the latest headlines in the fight against ALS and commemorate Juneteenth by looking back on a discussion of racial disparities in ALS. Read the inspiring story of Matt and Laurel Cluthe at https://alstexas.org/als-legacy-and-baseball-the-cluthe-family-story/ Urge your congressmen to support the Justice for ALS Veterans Act at …

1
Newsstand 23:32

1y ago23:32

23:32

This week on Undiscarded, join Tania and The Reliquary’s founder, Dave Herman, as they unpack the history of Petrella’s Point, a newsstand like no other. Barnyard red amidst the concrete jungle, the humble yet mighty kiosk stood at the corner of Bowery and Canal for thirty years. Owner Adam Petrella delighted visitors with whimsy and charm, invitin…

1
Taking Youth Caregiving Support Global… 15:48

1y ago15:48

15:48

This week Jeremy welcomes back Dr. Melinda Kavanaugh to learn about the Global Neuro YCare Foundation and efforts to support young caregivers around the world. Find resources to support young caregivers at https://www.als.org/navigating-als/resources/Youth-Education Read about Dr. Kavanaugh’s work to bring YCare to South Africa at https://www.als.o…

1
Letters to a Hero 21:49

1y ago21:49

21:49

This week on Undiscarded, meet the unsuspecting family with an uncanny name who found themselves in a web of confusion. Fan mail, requests, and even some generous checks kept turning up to the Parker family’s home in Forest Hills, Queens… all addressed to Spider-Man. What was initially dismissed as a prank turned out to be comic book canon. Tune in…

1
My ALS Journey… 11:23

1y ago11:23

11:23

This week, Jeremy talks to Leslie Ryan, Senior Director of Education and Professional Competencies at The ALS Association about the new My ALS Journey tool, a web-based platform that provides personalized guidance and support to people living with ALS. Learn more about My ALS Journey at www.alsjourney.org. This episode is brought to you by The ALS …

1
Testing Whether a Brain Computer Interface Can Help Restore Speech... 26:28

1y ago26:28

26:28

This week, Jeremy is joined by the co-directors of the UC Davis Neuroprosthetics Lab, Dr. Sergey Stavisky and Dr. David Brandman, to learn more about their research testing the feasibility of intracortical Brain Computer Interface technology to restore speech. Learn more about The ALS Association’s Seed Grant Program at https://www.als.org/stories-…

1
Rollerskate 30:15

1y ago30:15

30:15

Strap on your skates and get ready to roll back in time! In today’s episode, Tania joins rollerskating legend Eric Alston to take a spin through the history of the Brooklyn’s iconic Empire Rollerdrome, the surprisingly deep intersections of roller disco, urban communities, the Civil Rights movement, and how rollerskating continues to be a deep sour…

1
Honoring the Life and Legacy of Lindy Krohn Lund… 21:50

1y ago21:50

21:50

This week, Jeremy is joined by Laura Kildow, Karin Kildow, and hall of fame Olympic skier Lindsey Vonn to talk about their mother, Lindy Krohn Lund, who lost her one year battle with ALS in August 2022. Learn more about Lindy Krohn Lund at https://www.vaildaily.com/news/obituary-lindy-krohn-lund/ This episode is brought to you by The ALS Associatio…

1
Tofersen and the Future of ALS Drug Development… 25:47

1y ago25:47

25:47

This week, Jeremy talks to Dr. Paul Larkin, director of research at The ALS Association, and Dr. Frank Bennett, Chief Scientific Officer at Ionis and a pioneer in the field of antisense oligonucleotide research, about the FDA’s approval of tofersen and the future of ALS drug development. To learn more about why the FDA’s decision on tofersen matter…

1
Model Buildings 27:42

1+ y ago27:42

27:42

A riddle: when are tiny models more than tiny models? Answer: when they were once part of a HUGE model. In the case of these unprepossessing little wooden and plastic buildings, probably the greatest scale model ever built: the Panorama of the City of New York. In this episode, Tania talks to Lynn Maliszewski of the Queens Museum about the crown je…

1
The 2023 Sheila Essey Award Winner… 22:26

1+ y ago22:26

22:26

This week Jeremy talks to Dr. Virginia Lee, a pioneering biochemist and neuroscientist who was awarded the 2023 Sheila Essey Award. Learn more about the Sheila Essey Award for ALS Research at https://www.als.org/research/research-we-fund/fellowships/sheila-essey-award-als-research For more on the Essey family’s legacy, go to https://www.als.org/blo…

1
Improving Access to Power Wheelchairs Through Medicare… 20:22

1+ y ago20:22

20:22

This week Jeremy welcomes Rich Brennan, vice president of federal affairs at The ALS Association to provide an update on Medicare coverage of seat elevation in power wheelchairs, and talks to Katie Adams, an advocate in Kentucky who helped lead the charge to bring Medigap coverage to Kentuckians living with ALS. Learn more about the fight for Medig…

1
Stuffed Alligator 29:01

1+ y ago29:01

29:01

“Alligators thriving in the sewers of New York City” –– one of the most famous and persistent urban myths. But could it be… true? Well, according to former Manhattan Borough Historian Michael Miscione, it’s at least “true-ish”! Learn more as he and Tania go down the manhole to find a truly epic tale of boys vs. beast. Look at photos of this object …

1
Expanding Diversity in Clinical Trials… 18:33

1+ y ago18:33

18:33

This week, Jeremy welcomes Dr. Terry Heiman-Patterson, professor of neurology at the Lewis Katz School of Medicine at Temple University and director of the Temple MDA/ALS Center of Hope, to talk about her work looking into ways to expand access to clinical trials for historically underserved populations. Learn more about The ALS Association’s Clini…

1
Legislation Could Further Limit Discriminatory Drug Cost Controls… 16:33

1+ y ago16:33

16:33

This week, Jeremy is joined by Sara Van Geertruyden, executive director of the Partnership to Improve Patient Care, to talk about legislation moving through Congress that would extend prohibitions on the use of quality adjusted life years (QALYs) in drug pricing and access decisions. Read the National Council on Disabilities report finding QUALYs t…

1
Pigeon Tags 26:18

1+ y ago26:18

26:18

“Why would pigeons need tags?” Tania asks in this episode, and it’s a natural question – pigeons are underfoot everywhere in big cities, and claiming one as your own might seem as silly as claiming a particular dead leaf or piece of litter. But popular urban naturalist Gabriel Willow joins her to explain how domestic pigeons have been an important …

1
Why FDA Decision on Tofersen Matters… 30:04

1+ y ago30:04

30:04

This week, Jeremy is joined by Larry Falivena, a member of The ALS Association’s Board of Trustees and Dr. Kuldip Dave, vice president of research at The ALS Association, for reaction to the decision by an FDA advisory committee to clear the path for approval of tofersen – and why it’s important for the future of the drug development pipeline. Read…

1
Honoring Women’s History Month… 35:05

1+ y ago35:05

35:05

This week, Connecting ALS celebrates Women’s History Month by shining a spotlight on two researchers who are leading the quest to change the future of ALS. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.By ALS Association

1
Letters from a Sign 32:13

1+ y ago32:13

32:13

Who’s hungry? In today’s episode of Undiscarded (produced with the collaboration of the New York Historical Society) Tania joins Jack Lebewohl of the famous 2nd Ave Deli to talk about the rise and decline of the delicatessen, the great culinary contribution of one of the immigrant groups that most dramatically shaped New York as we know it: the Yid…

1
Mannequin 20:02

1+ y ago20:02

20:02

In today’s episode of Undiscarded, local burlesque star and reigning Miss Coney Island Maggie McMuffin joins Tania to talk about a decorated mannequin that represents the life and times of the most famous of all exotic dancers – the sensation of the Chicago Exposition and Queen of the Boardwalk, the celebrated and notorious “Little Egypt”! Look at …

1
Lightbulb 20:57

1+ y ago20:57

20:57

In the series premiere of Undiscarded, Tania talks to City Reliquary founder Dave Herman about one of the highlights (pun intended) of the museum’s most celebrated collection. It’s a humble-looking artifact donated by a man who dedicated his life to serving that most magnificent of New York icons: The Statue of Liberty. Look at photos of this objec…

1
Pressing for Increased Federal Funding for the Fight… 16:17

1+ y ago16:17

16:17

This week, Jeremy is joined by Denise Bailin, Director of Congressional Affairs at The ALS Association for a deep dive into the role federal funding plays in the fight against ALS and how advocates can help expand existing funding on ALS. Learn more about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities/…

1
Season One Teaser 1:04

1+ y ago1:04

1:04

Undiscarded: Stories of New York, the new podcast from The City Reliquary, is coming soon to a podcast feed near you!By CitizenRacecar & The City Reliquary

1
FDA Advisory Committee to Consider Tofersen… 27:23

1+ y ago27:23

27:23

This week Jeremy talks to Dr. Neil Thakur about The ALS Association’s comments to the FDA urging them to approve tofersen, a gene therapy targeting SOD1 mutations. He then digs into the tofersen clinical trials with lead investigator Dr. Timothy Miller. For more information on genetic testing and counseling go to https://www.als.org/understanding-a…

1
Expanded Efforts at Advocacy in States… 21:39

1+ y ago21:39

21:39

This week, Jeremy explores The ALS Association’s expanded efforts to advocate for better public policies in states throughout the country to help make ALS livable for everyone, everywhere. He is joined by Kara Nett Hinkley, National Vice President of State Policy for The ALS Association. Learn more about state advocacy efforts at https://www.als.or…

1
How to Break the News... 27:29

1+ y ago27:29

27:29

Welcome to Connecting ALS. This week, Jeremy talks to an international team of researchers exploring ways to improve the way health care professionals can break the news more effectively. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.By ALS Association

1
The Genetics of ALS... 30:55

1+ y ago30:55

30:55

This week Jeremy digs into what we know about familial ALS and the current state of research into developing gene therapies that could treat the disease. He is joined by Larry Falivena, a member of The ALS Association’s board of trustees, and leading ALS researcher Dr. Michael Benatar. Learn more about familial ALS at https://www.als.org/understand…

1
Searching for Ways to Enhance Clinical Trials... 13:51

1+ y ago13:51

13:51

This week Jeremy talks to Dr. Paul Larkin, Director of Research at The ALS Association, about the projects funded this year through the Clinical Trial Capacity Awards program. Learn more about the research funded through the Clinical Trial Capacity Awards program at https://www.als.org/user/login?destination=/stories-news/als-association-grants-nea…

1
Advocating for Access to Genetic Testing… 20:19

1+ y ago20:19

20:19

This week Jeremy talks to Melanie Lendnal and Lindsay Gill from The ALS Association’s public policy team to learn more about the fight for public policies that will ensure access to genetic counseling and testing and a bill in Maryland that will prohibit discrimination based on the results of a genetic test. Learn more about the Genetic Testing Pro…

1
Making Video Games Accessible for People Living with ALS… 24:11

1+ y ago24:11

24:11

This week Jeremy talks to a team of researchers in Australia who are looking into the ways video games can be more accessible for gamers living with ALS. Follow Dr. Kirsten Harley’s story at https://kirstenharleymnd.home.blog/author/drkirstenharley/ Learn more about research into making video games more inclusive at https://www.mndaustralia.org.au/…

1
Expanding Access to Clinical Trials … 11:10

1+ y ago11:10

11:10

This week, Jeremy explores efforts to increase the number of clinical trials and expand access to those trials with renowned ALS researcher, Dr. Merit Cudkowicz. Learn more about the Clinical Trial Capacity Awards at https://www.als.org/research/funding-opportunities/trial-capacity-awards-2022 This episode is brought to you by The ALS Association i…

1
Revisiting Her ALS Story... 18:32

1+ y ago18:32

18:32

As we take a little break this week, we invite you to revisit one of our episodes released last year featuring Her ALS Story. This episode is brought to you by The ALS Association in partnership with CitizenRacecar.By ALS Association

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