In this episode of The Health Advocates, Steven Newmark is joined by Rob Long, Executive Director of Uplifting Athletes. Rob shares his journey from All-American punter at Syracuse University to rare brain cancer survivor and patient advocate. Diagnosed during his senior season, Rob’s football career was cut short, but his passion for teamwork and purpose found new life in advocacy. Through his leadership at Uplifting Athletes, Rob helps amplify rare disease awareness, fund groundbreaking research, and connect patients to uplifting experiences across the country.

Join us for a conversation about resilience, purpose, and how sports can unite and empower the rare disease community.

Among the highlights in this episode:

02:25: Rob shares how he started playing football, got recruited by Syracuse, and committed after being offered a full scholarship

04:05: Rob describes the symptoms leading up to his diagnosis and the moment he learned he had a large brain tumor

06:30: Rob recalls undergoing emergency surgery and being told he likely wouldn’t live more than 36 months — a moment that shifted his entire life’s trajectory

07:45: Rob explains how seeing his teammates at an important game post-surgery gave him the sense of normalcy and emotional support he desperately needed

09:24: Rob offers advice to friends and families supporting loved ones through serious illness: show up, and stay consistent

10:33: Rob shares how his teammates started the Syracuse chapter of Uplifting Athletes in his honor and how that led him to join the organization

12:42: Rob discusses connecting with patients around the country and the shared experience of living with a rare disease

14:21: Rob explains how people can support Uplifting Athletes by donating, liking and sharing content, and helping increase visibility for the rare disease community

To learn more about Uplifting Athletes go to: www.upliftingathletes.org

15:34: Steven wraps the episode by reflecting on the inspiration of his story and continued advocacy

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of The Health Advocates, Steven Newmark breaks down the potential $880 billion in cuts to Medicaid currently under debate in Congress. Steven walks through what’s at stake, who could be affected, and why this moment matters. He explains the proposed changes to work requirements, federal matching cuts, and Medicaid expansion support — and outlines what patients, caregivers, and advocates can do to stay protected and make their voices heard.

Tune in to better understand the real-life impact of these proposed cuts and how you can take action.

Among the highlights in this episode:

00:32: Steven explains what Medicaid is, who it covers, and why it’s the largest insurer in the country

01:18: Steven outlines the proposed $880 billion in budget cuts over 10 years and what that means in context

02:12: Steven discusses the potential reduction in federal matching funds and its consequences for states

03:00: Steven highlights who would be most affected by cuts: low-income families, seniors, people with disabilities, and those with chronic illnesses

03:35: Steven explores the ripple effects of cuts, from delayed care to increased provider strain

04:05: Steven offers a look at the legislative timeline: proposals are expected over spring and summer, with votes likely in fall

04:28: Steven provides actionable tips for listeners

05:20: Steven closes with a reminder that Medicaid is more than a budget issue — it’s a health lifeline for millions

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

In this episode of The Health Advocates, Steven Newmark breaks down the latest public health developments you need to know. From a surge in measles and dengue cases to proposed changes in food dye regulations, Steven explains what’s happening, why it matters, and how it could impact people living with chronic illness. He also unpacks the delay in FDA approval for the Novavax COVID-19 vaccine and introduces the Vaccine Integrity Project — a new initiative working to preserve trust in vaccine guidance.

Tune in for the insights you need to stay informed and protect your health.

Among the highlights in this episode:

00:40: Steven Newmark, Chief of Policy at GHLF, reports that U.S. measles cases are surging, nearing a 25-year high with 923 cases, including a hotspot in El Paso, TX

01:22: Steven notes a political divide in public concern over measles, citing Kaiser Family Foundation survey data

01:40: Dengue fever cases are rising in the U.S. due to travel and climate shifts; Steven urges use of DEET-based repellents in high-risk states

02:24: Steven breaks down HHS’s proposed voluntary phaseout of certain petroleum-based food dyes, highlighting industry pushback and potential allergy risks

03:38: Steven explains the FDA’s pause and policy change regarding full approval for the Novavax COVID-19 vaccine, including a new clinical trial requirement

04:33: Steven introduces the Vaccine Integrity Project, a private group of vaccine experts formed to provide trusted guidance amid concerns of policy politicization

05:43: Steven wraps up with a reminder to visit https://ghlf.org/vaccine-resources for ongoing updates and resources on vaccine

Contact Our Host

Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org

A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.