As a patient and father of five sons with the rare disease of Hypoparathyroidism, I felt often alone and ill- equipped to cope with the challenges the disease brought to our daily lives in Idaho Falls, Idaho. In 1994, through a study at the National Institutes of Health (NIH), I first met another patient with this disease besides my children. It was then that the idea for an association dedicated to hypoparathyroidism patients was hatched. That year we began with a newsletter for both patients, family, and healthcare providers.
Now, with twenty years of hard work, we have grown a worldwide membership exceeding 5,000 members in 70 countries. We continue to publish our newsletter, and have since launched a website as a hub for patient support in partnership with doctors and researchers. We host an annual conference, including speakers and attendees from across the globe. Our conferences further bring the medical and patient communities together for mutual exchange on how to treat and live with such a difficult disease.
In 1998, the Association incorporated as a nonprofit, with an all-volunteer board, and became a tax-exempt 501(c)(3) organization. As we’ve grown, we have excitedly supported numerous other associations’ creations in other countries around the globe. I am delighted to say, with our collective efforts, we have and will continue to make a difference in the lives of those touched by hypoparathyroidism. In the face of this disease, we now need not feel alone. Through the Association and the work we continue to push and grow, patients like me and my sons now have better access to information and research, to skilled and knowledgeable doctors, and a robust, supportive, and understanding community. As I surmised back in 1994, clearly, together we can make a difference.
Jim Sanders, Founder and President,
HypoPARAthyroidism Association, Inc.