S8, Ep 16- Brain Cancer Changed Rob Long's Life — Now He's Changing the Game for Rare Disease Patients

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

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Steven Newmark, Chief of Policy at GHLF: [e-mail]

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

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