Estela Lugo, patient advocate

Estela was diagnosed with a progressive neuropathy called Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later. In 2002, she graduated from FIT with a Bachelor’s in Interior Design. Today, her professional background in design, marketing, trend forecasting, and creative direction brings an unexpected approach to connecting the disability community to wellness, empowerment, and health. After volunteering for eight years, Estela joined the Hereditary Neuropathy Foundation full-time in 2018 as their Program Development Manager. Later in 2018, she testified in front of the FDA on the patient experience and the importance of funding CMT studies and potential therapies. As moderator for the CMT-Connect webinar series, Estela enjoys sharing resources and expert information with the CMT community on various valuable topics. On the EmBrace It Podcast, she interviews community thought leaders and aims to empower women living with disabilities in all facets of life. Estela and co-host Lainie Isbia also provide original inclusion workshops focusing on improving advocacy & DEI through communication tools, starting with “How to Communicate with Anyone About Disability.” They’ve worked with many top brands, such as Levi Strauss, Pinterest, Lockheed Martin, The Abilities Expos, SUNY Farmingdale College, Health Union, and more. In 2019, Estela gave her first TEDx talk titled “RePurpose Your Pain” on turning adversity into life’s most beautiful work. She co-teaches inclusive and adaptive design at the Fashion Institute of Technology for their Design for Social Impact program. Estela is represented by Gamut Management, an all-inclusive talent agency.