Patient Advocacy is Integrating Lived Experience in Medicines Development

A native New Yorker and former senior executive in five preeminent marketing and communications companies, Sheila has spent more than two decades designing marketing, media and health education campaigns for the top 50 pharmaceutical companies across a broad range of therapeutic categories from molecule to market. A former high school teacher of foreign languages, she has worked on behalf of the healthcare industry throughout North America, Western Europe and Latin America with a focus on communities of color. She teaches and has lectured on health equity and cultural competency at Quinnipiac University School of Medicine, Rutgers, New York University and Queens College. She has given over 250 keynote presentations and conducting workshops on cultural competency, anti-bias and diversity. She is published in Pharmaceutical Executive, PharmaVoice, Medical, Marketing & Media and numerous articles published in a variety of consumer health and ethnic publications. Sheila is known for her unique ability to galvanize communities of color around health and social justice issues. She has been featured in Essence Magazine, Black Enterprise, The Positive Community, Madame Noire, The Network Journal and a frequent panelist during the sessions of the annual Congressional Black Caucus Health Braintrust, Congressional Hispanic Caucus Health Institute and the Asian Pacific Islander American Health Forum. Sheila has received numerous awards for her innovative health marketing strategies to reach people of color.

Born and raised in Mexico, Lorena is a people oriented and sensitive change agent. As Head of Diversity Strategy for R&D, Lorena is responsible for driving the Diversity in Clinical Trials enterprise strategy, with the objective of recruiting a Patient population that is more reflective of the real world and aligned with the epidemiology of the disease studied. After more than 10 years in Commercial roles in the industry, she pivoted her career into a role with a stronger impact and benefit for patients and underserved populations around the world. She holds a BA in International Business from Tec de Monterrey, a Masters in Strategic Management and Human Capital from Universidad Anahuac and a D&I Certificate from Cornell. Lorena has always been a strong inclusion and Health Equity advocate and believes in the value of connecting others and cultivating networks, helping whenever is needed as an active member of WOCIP (Women of Color in Pharma), the Red Shoe Movement, the NJ Mental Health Association, SGM (Sexual and Gender Minorities) Alliance and her Town's Diversity Committee in New Providence, NJ.

Barry Nelson has been a resident of Boston for over thirty years and has deep ties to the local community. He is a retired risk management professional, with credentialing for business continuity and disaster recovery planning. He has a background in technology that extends across multiple industries, including financial services and banking, airlines, and government contracting.

Since 2012, Barry has served as a patient experience presenter and patient advisor. He regularly participates in patient and family centered conferences, patient experience panels, and other events where he discusses opportunities for improving long-term health care outcomes. He has participated on multiple research initiatives that focus on patient centered outcomes and healthcare improvements at the Brigham and Women’s Center for Patients and Families and the Dana-Farber Cancer Institute. Barry’s spirit of activism is centered on his Christian faith. He is the co-chair of the “Somebody Prayed For Me, Let Us Pray with You” weekly prayer call.

As a patient volunteer at Brigham and Women’s Hospital Center for Patients and Families, he supports several Patient Family Advisory Councils, Steering Committees, Patient-Centered Outcomes Research Initiatives (PCORI), and other research goals focused on patient care and engagement. Barry also volunteers at the Dana-Farber Cancer Institute and provides support for marketing, fundraising, and community outreach.

Ashley M. Ratcliff is a bestselling author, communications professional, invisible illness advocate, and speaker who lives to tell stories in myriad formats. She currently serves as Director of Communications & Operations with We Are ILL, a patient advocacy nonprofit on a mission to redefine what “sick” looks like by making the MS community more inclusive and by involving Black women and women of color in the conversations surrounding MS awareness, education, and treatment.

Being diagnosed with MS in March 2018 ignited Ashley’s passion for supporting and uplifting Black women living with MS and other chronic illnesses. Noticing the dearth of representation of women who look like her and the barriers to accessing relevant information for newly diagnosed patients, Ashley wrote Jesus Year, a self-help memoir that caters to both segments of MS patients.

Publishing Jesus Year — her first solo book — during the COVID-19 pandemic is one of Ashley’s proudest achievements. The book became a bestseller on Amazon in April 2021, and she released the audiobook version, which she narrated, in December 2021 on the anniversary of the print release. Ashley previously co-authored a collection of short stories titled Stories 4 Women, focusing on the beauty and diversity of the woman’s experience. The book earned an honorable mention at the Hollywood Book Festival.

Ashley resides in Long Beach, California, where she serves as the co-chair of the MS Society’s Long Beach Community Council and is the captain of the five-year top fundraising Walk MS team, Ashley’s Crew for a Cure. She also is a member of the Society’s Black MS Community Engagement Advisory Committee.