Hope Foundation mourns loss of founder Shelley Weir

Shelley Weir, MBE, founder and president of the Hope Foundation, has died following a brief illness, leaving behind a 35-year legacy of championing the rights, needs and voices of people living with chronic illnesses in Barbados and across the Caribbean. She died on Sunday, September 6.

Below is the foundation’s full statement:

It is with profound sadness that the board, members and wider family of Hope Foundation announce the passing of our Founder and President, Shelley Weir, MBE, on September 6, following a brief illness.

Shelley was the heart, voice and driving force behind Hope Foundation for more than three decades. Her life’s work changed the landscape of patient advocacy in Barbados and helped give a stronger voice to people living with chronic illness across the Caribbean region.

Diagnosed with lupus in 1990, Shelley transformed her personal experience with that autoimmune disease into a lifelong mission to ensure that patients had access to information, support and a voice in the decisions affecting their health. In 1991, that mission gave birth to the Hope Foundation, initially established to support people living with lupus and to educate the public and medical professionals about the disease.

Just one year later, in 1992, Hope Foundation became the first patient-led organisation to host an international medical conference, setting the tone for what would become one of the hallmarks of Shelley’s advocacy — bringing patients and medical professionals together through education.

Shelley’s vision soon expanded beyond lupus. She broadened Hope’s mandate to embrace people living with sickle cell disease and arthritis, building an organisation grounded in the principle that patients should be informed, empowered and actively involved in their own care.

She was a true trailblazer in patient advocacy. Shelley became the first non-medical person to chair the Patient Care Committee of the Board of the Queen Elizabeth Hospital, bringing the patient’s perspective into a space traditionally occupied by healthcare professionals. Her knowledge and experience also made her a sought-after advisor to patient organisations across the Caribbean, where she shared Hope Foundation’s model and supported the development of similar groups.

Shelley’s advocacy was never confined to words. She created practical initiatives designed to improve the lives of patients and those who cared for them. Among these were the Newly Diagnosed Lupus Patients Seminar to give new patients insight into their conditions, the Sherene Hillock-Hinds Caring for the Carer Award, which recognises the often-unheralded contribution of caregivers, and the Lupus Essentials Kit programme, developed during the COVID-19 pandemic to help patients stay safe and take a more active role in managing their health. She also co-authored, Lupus Essentials, with Dr Cindy Flower, further extending her commitment to the education of medical professionals.

Her passion for advocacy was supported by a deep commitment to strengthening the non-governmental sector. Shelley earned a Master of Science degree in Non-Governmental Organisation Management from the London School of Economics and Political Science, bringing that expertise to the organisation she nurtured for 35 years.

In 2009, her outstanding contribution was recognised with the award of Member of the Order of the British Empire (MBE). Yet, for all her accomplishments, positions and accolades, Shelley’s greatest legacy is found in people she helped. The scared, newly diagnosed patient who discovered that they did not have to face their illness alone; the caregiver who finally felt seen; the patient who learned to ask questions, understand their condition and advocate for better care; the organisations she helped to strengthen and the conversations she helped to change.

Shelley understood that patients should never be passive participants in their healthcare. She spent 35 years ensuring that their voices were heard.

For the Hope Foundation family, this loss is immeasurable. We have lost our founder, a relentless patient advocate, a fierce leader and loyal friend – a true force of nature.

We extend our deepest condolences to Shelley’s family and loved ones, and to the patients, caregivers, colleagues, friends and advocates in Barbados, across the Caribbean and beyond whose lives she touched.

Rest peacefully, Shelley.