The Power of Science, Community and Desperation to Speed Lifesaving Breakthroughs for the Final 10% – Emily Kramer-Golinkoff, MBE


Manage episode 341881083 series 2639921
Зроблено The CFRI CF Community Voices Podcast і знайдено завдяки Player FM та нашій спільноті. Авторські права належать видавцю, а не Player FM, і аудіоматеріали транслюються безпосередньо з сервера видавця. Натисніть на кнопку Підписатися, щоб слідкувати за оновленнями в Player FM або скопіюйте і вставте посилання на канал до іншої програми для подкастів.

Emily Kramer-Golinkoff, an adult with cystic fibrosis and the Co-Founder of Emily's Entourage, an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of CF, describes her experience growing up with CF and the heart-shattering realization that she is a part of the approximately 10% of the CF community that is ineligible for CFTR modulators. She discusses the promise of science and innovation, each individual’s power to create transformative change, and the unique solidarity and commitment of the whole CF community to create a better future for everyone with CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

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