I currently serve as Director of Communications for U.S. Pain Foundation, the leading organization for people with chronic pain, and associate director for Klippel-Feil Syndrome Freedom, a small but fierce patient support network. These causes both mean so much to me. I began experiencing sudden, debilitating pain at the age of 24 due to Klippel-Feil Syndrome (KFS), a rare, degenerative spine defect. Although the pain forced me to leave a full-time job in communications at Mass General Hospital, I found a way to reinvent myself and combine my background in health care with a passion for advocating for others. It started with blogging about my experiences with pain. Around 2013, I was fortunate to connect with Sharon Nissley and KFS Freedom. Working with Sharon, I spearheaded the development a 100+ question registry for KFS patients--the only one of its kind. Research is currently being conducted on the basis of this registry. But I wanted to do more. In 2015, I began volunteering with U.S. Pain and was featured in its INvisible Project magazine. Within six months, I officially joined the staff as Associate Director of State Advocacy. Despite being terrified of public speaking, I began sharing about the need for better care in numerous forums, including the FDA, the CT State House, and others. In 2017, I moved into a new role as Director of Communications. I'm still involved in our advocacy work, but I also coordinate communications across the organization. I have focused particularly on educational content, developing a pain management guide, launching a bimonthly webinar series, and creating an informational blog. My focus is always on how we can better serve people with pain. I continue to speak out about chronic pain whenever possible--even though I still hate public speaking! In 2018, I was proud to provide one of a handful of patient testimonies in front of a federal task force on pain. Please consider endorsing me the award below!
Best Kept Secret Nominee
I’m a Patient Leader