Meet Debbie, a member of our Board of Trustees who has supporting The Foundation since 2021.
My Story
I have been serving as a non-executive director (NED) at The Pituitary Foundation since 2021. In my role, I focus on safeguarding, information security, enhancing our approach for interacting with medical professionals and the pharmaceutical industry, including projects and supporting strategic planning, governance and outreach programs.
Why I Volunteer
My motivation for volunteering stemmed from a personal connection to the cause. I wanted to contribute my skills to an organisation that is making a significant impact in the lives of those affected by pituitary disorders. The Foundation’s mission resonated with me and I was eager to support its initiatives. When I was first diagnosed with arginine vasopressin deficiency (AVP-D, previously known as DI) in 2010 and then latterly when I became gravely ill with complications in 2019, The Pituitary Foundation offered a rare light of hope. The combination of patient-specific information and compassion helped me to feel understood, but more importantly provided practical avenues for support and expeditious treatment.
What I have enjoyed most about being a volunteer is the sense of community and the opportunity to connect with individuals who share a passion for supporting others. Working with a team that is genuinely dedicated to improving awareness and providing resources brings a deep sense of fulfilment.
Moreover, I appreciate the learning opportunities; each experience I’ve had has contributed to my personal and professional growth. In recent years, I have been fortuitous to be invited to contribute as a patient expert to a number of initiatives including; development of NHS protocols for the treatment of patients with AVP-D and COVID, information videos to educate patients and healthcare providers about pituitary conditions and available treatments and clinical guidelines for AVP deficiency involving members from both the American and European Endocrine Societies. I have also been involved in talks for patients and contributions to other groups, like the Pituitary Society and the Endocrine Society.
I am in a serendipitous position as both a research scientist and patient. This was particularly helpful in ensuring the standardisation of medical terminology to improve data interoperability and that it is correctly included in Medical Dictionary (SNOMED) for scientific and medical use. I have also been involved in liaising directly with the health agencies and drug marketing authorisation holders in response to drug shortages caused by manufacturing and supply chain challenges.
One of my favourite moments was as a contributor to the Global DI Renaming Group, as the patient representative. This resulted in the name change from diabetes insipidus to arginine vasopressin deficiency globally and publication in a number of medical journals worldwide. It was recognised that the term “diabetes” was resulting in was poor patient care due to the confusion with diabetes mellitus. I have heard inspiring testimonials from patients and physicians, where our efforts may have resulted in a patient having much better outcomes.
To anyone thinking of volunteering…
I would highly recommend volunteering because it offers a unique opportunity to make a tangible difference in people’s lives. The experience not only allows you to give back but also helps you develop new skills and build relationships with like-minded individuals. I believe that being part of a cause that you care about can be incredibly rewarding and enriching.
To anyone considering becoming a volunteer, I would encourage you to take the leap! Volunteering is a wonderful way to engage with a cause that matters to you and to learn from others along the way. Whether you have a specific skill set or simply a desire to help, your contribution can be valuable. Don’t hesitate to reach out—I would be happy to share more about my experiences or answer any questions you may have.
