A MESSAGE FROM Mimi Sue Novak's Fundraising Page
For the past decade, my sister, Keating, has been fighting a battle that most people never see: navigating multiple rare chronic diseases, including Still’s Disease, CRPS, and dysautonomia, along with years of debilitating symptoms that doctors couldn’t explain or diagnose. Her journey has involved countless doctor visits and the exhausting, frustrating process of searching for answers in a system that overlooks or misunderstands rare conditions.
Watching her strength and perseverance through all of this has been one of the most profoundly inspiring experiences of my life. If you’ve met Keating, you would never know what she endures because of the grace with which she carries herself. For example, with CRPS, she experiences pain levels of 42–47 out of 50 on the McGill Pain Scale, which is higher than that of limb amputation without anesthesia. At the same time, Still’s Disease and dysautonomia bring a constant rotation of joint and muscle pain, fevers, brain fog, chronic fatigue, and migraines.
The National Organization for Rare Disorders (NORD) is dedicated to improving the lives of people living with rare diseases. The organization helps patients access diagnoses, specialists, clinical trials, and life-saving medications that might otherwise be out of reach. NORD also advances research, supports caregivers, and maintains a comprehensive database of more than 1,200 rare diseases that help patients and families find answers when they need them most.
Please consider supporting a cause that means the world to my family and me! <3
