128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou

Rare Care Podcast

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All About Change

1
Chris Nowinski - Protecting Athletes from Head Injuries & Preventing CTE 27:28

12 dni temu27:28

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27:28

Chris Nowinski is a former football player at Harvard University and professional wrestler with WWE, World Wrestling Entertainment. After enduring a career-ending head injury, Chris has dedicated his professional life to serving patients and families affected by brain trauma, particularly Chronic traumatic encephalopathy, or CTE, a progressive neurodegenerative disease that develops after repeated head injuries. Jay and Chris discuss the state of head injuries in American athletics, the difference between advocating for head safety at youth and professional levels, Chris’ newest research, and much more. Episode Chapters (00:00) Intro (00:50) changes in the culture around concussions in the past two decades (02:39) padded helmet technology (03:55) concussion reporting in the NFL (10:35) Chris’ career path and concussion history (14:52) connecting with activists who haven’t themselves suffered a traumatic brain injury (17:42) SHAAKE - a new sign to identify concussions (20:53) Unions can help players advocate for safety policies (23:10) final thoughts and goodbye For video episodes, watch on www.youtube.com/@therudermanfamilyfoundation Stay in touch: X: @JayRuderman | @RudermanFdn LinkedIn: Jay Ruderman | Ruderman Family Foundation Instagram: All About Change Podcast | Ruderman Family Foundation To learn more about the podcast, visit https://allaboutchangepodcast.com/…

37 weeks temu 15:00

MP3•Źródło odcinka

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.

170 odcinków

#Science #Fitness #Medicine #Rare Care

128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou

Rare Care Podcast

published 37 weeks temu

Udostępnij

MP3•Źródło odcinka

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.

170 odcinków

#Science #Fitness #Medicine #Rare Care

Todos os episódios

Rare Care Podcast

1
161: An Interview With Retired NFL Athlete and Amyloidosis Patient Advocate Art Still 17:03

1 day temu17:03

17:03

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Art Still, former defensive end for the Kansas City Chiefs and an NFL Hall of Famer who's now a patient advocate dedicated to raising awareness about amyloidosis.

Rare Care Podcast

1
160: An Interview With Heather Landau, MD, on the Latest Therapies for Amyloidosis 17:03

9 dni temu17:03

17:03

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews oncologist-hematologist Heather Landau, MD, of Sloan Kettering Memorial Cancer Center in New York City, for National Amyloidosis Awareness Month.

Rare Care Podcast

1
158: An Interview With Hereditary Angioedema Expert Dr. Timothy Craig 14:19

15 dni temu14:19

14:19

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Timothy Craig, DO, a tenured professor of medicine, pediatrics and biomedical sciences at Pennsylvania State University in Hershey. Dr. Craig has been researching hereditary angioedema for 30 years.

Rare Care Podcast

1
158: An Interview With Dr. Sangeetha Venugopal on the relationship between smoking and myelodysplastic syndromes (MDS) 12:08

23 dni temu12:08

12:08

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sangeetha Venugopal, MD, assistant professor of clinical medicine at the University of Miami's Sylvester Comprehensive Cancer Center. Dr. Venugopal speaks on how smoking worsens outcomes for patients with a group of blood cancers known as myelodysplastic syndromes (MDS).…

Rare Care Podcast

1
157: An Interview With Andrea Renzi, a Patient Advocate for Women Affected by HDFN 12:15

4 weeks temu12:15

12:15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Andrea Renzi, a New Hampshire mother and patient advocate whose family has been affected by hemolytic disease of the fetus and newborn (HDFN).

Rare Care Podcast

1
156: An Interview With Dr. James Bussel on Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT) 13:27

5 weeks temu13:27

13:27

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews James Bussel, MD, emeritus professor of pediatrics, medicine, and obstetrics and gynecology at New York's Weill Cornell Medicine. The topic of their discussion is nipocalimab as a potential treatment for fetal and neonatal alloimmune thrombocytopenia (FNAIT).…

Rare Care Podcast

1
155: An Interview With Rigoberto Garcia, Executive Director of the Hemophilia Foundation of Southern California 15:24

6 weeks temu15:24

15:24

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Rigoberto Garcia, executive director of the Hemophilia Foundation of Southern California, about the difficulty minorities—especially undocumented Hispanics—have in accessing treatment for their bleeding disorders.

Rare Care Podcast

1
154: An Interview With AATD Patient Kristin Hatcher of the Global Liver Institute 13:16

7 weeks temu13:16

13:16

Larry Luxner, senior correspondent for Rare DIsease Advisor, interviews Kristin Hatcher, director of pediatric and rare diseases at the Global Liver Institute. Hatcher has both alpha-1 antitrypsin deficiency (AATD) and Von Willebrand disease, a rare clotting disorder.

Rare Care Podcast

1
153: An Interview With Terry Jo Bichell, PhD, Founder and Director of CombinedBrain 15:31

8 weeks temu15:31

15:31

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Terry Jo Bichell, PhD, founder and director of CombinedBrain, which advocates for patients with 110 neurogenetic diseases. Dr. Bichell is part of a panel that's studying how the US Food and Drug Administration can do a better job of speeding up clinical trials and becoming more transparent about its decisions.…

Rare Care Podcast

1
152: An Interview With Erin Collins, Founder of the Chasing Rainbows Foundation 15:23

10 weeks temu15:23

15:23

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Erin Collins, founder of the Chasing Rainbows Foundation in North Carolina's Outer Banks. The charity raises awareness of HDFN and other rare pregnancy-related diseases.

Rare Care Podcast

1
151: An Interview With NMOSD Expert Dean Wingerchuk, MD, of the Mayo Clinic 10:27

10 weeks temu10:27

10:27

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Dean Wingerchuk, MD, speaks on the potential for treating neuromyelitis optica spectrum disorder (NMOSD) with stem-cell therapy.

Rare Care Podcast

1
150: An Interview With Beloved Huntington Disease Activist Jimmy Pollard 12:17

11 weeks temu12:17

12:17

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jimmy Pollard, who for the past 38 years has advocated on behalf of people around the world affected by Huntington disease.

Rare Care Podcast

1
149: An Interview With Clinical Psychologist Rosalind Kalb, PhD, of Can Do-MS 13:55

12 weeks temu13:55

13:55

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews clinical psychologist Rosalind Kalb, lead senior programs consultant for Can-Do MS, a Colorado-based nonprofit health and wellness organization.

Rare Care Podcast

1
148: An Interview With Huntington Disease Patient Activist Tanita Allen 11:16

13 weeks temu11:16

11:16

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Tanita Allen, a Black woman with Huntington disease who has made it her mission to increase awareness about the disorder and its devastating impact on patients regardless of their racial or ethnic background.

Rare Care Podcast

1
147: An Interview With Jean Elwing, MD, a Pulmonary Hypertension Expert at the University of Cincinnati 13:46

15 weeks temu13:46

13:46

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jean Elwing, MD, a professor of medicine and director of the Pulmonary Hypertension Program at Ohio's University of Cincinnati.

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128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou