Patient Leader Certification: What's Your 60 Second Pitch?
What is your 60-second pitch? In other words, what would you say to someone to summarize who you are in 60 seconds or less?
Share your pitch here, and read other Patient Leaders' pitches! Remember that as you evolve in your Patient Leader journey, your pitch may evolve, too!
Hello, I'm Tara, and I've lived with Eisenmenger Syndrome for over twelve years. I was born with an atrial septal defect that presented as a mild heart murmur that has persisted to today. Over twenty nine years of turbulence, the blood vessels in my lungs became narrowed and lead to pulmonary arterial hypertension (PAH). My right heart pressures are so high, I have a right to left shunt, which is Eisenmengers.
Eisenmenger syndrome is progressive and incurable. Treatment is meant to delay progression and clinical worsening.
My treatments have consisted of 24/7 infusions - both IV and subcutaneous, pills every eight hours, pills every twelve hours, daily pills that have caused bone pain and nasal congestion, and finally an injection every three weeks that also decreased my platelets.
When I'm not in too much pain from new subcutaneous infusion sites, I love spending time near the water. Whether its walking to the Missouri River for exercise or spending the day at the local water park, I still try to enjoy my life as much as possible.
Hello, I'm Julie - diagnosed five years ago with Graves' Disease, Acromegaly, and Thyroid Eye Disease. I had not heard of these medical conditions, but I knew I needed to research, educate myself, and advocate.
My eyesight declined rapidly with eye bulging, excess skin on the eyelids, watery eyes, pain, etc. In addition to symptoms of Graves and TED, I had a pituitary tumor that elemy growth hormones.
About three years later, I met a few individuals from the TED Community organization, which had a pivotal impact. Learning I wasn't alone proved comforting, empowering, and assuring. Doors opened so I could share my story online, in-person, and as a panelist. Advocacy work, while still battling medical issues, can be challenging and rewarding at the same time. Knowing I'm helping others while helping myself is amazing.
Hi, I’m Patrice Sterling—author, caregiver, and advocate. My journey began in pediatric hospital rooms, navigating the ups and downs of Sickle Cell Disease with my son. What started as a mother fighting for answers quickly grew into a mission to speak up not just for him, but for every warrior and every caregiver trying to make sense of a complex, often overwhelming system.
Over the years, I’ve turned lived experience into action—creating safe spaces, building resources, and showing up in rooms where real change happens. I advocate for those living with SCD and the people who love and care for them, making sure our voices are part of the conversation in healthcare, policy, and beyond.
Whether I’m speaking at roundtables, leading workshops, or designing resources, my mission is clear: to build bridges between families, providers, and decision-makers, and to ensure that real stories inform real solutions. I believe advocacy is legacy work, and I’m here to write it, speak it, and live it every day.
Hi I am Jamie Wood. I bring a panoramic view to the advocacy arena. I am a Former Licensed Practical/Vocational Nurse, living with Andersen Tawil Syndrome Familial, with Hypokalemic Periodic Paralysis episodes. Andersen Tawil (ATS) affects about 1:1 million. I am a Wife Mom caregiver… not just patient the list goes on. After working in healthcare for nearly 2 decades and experiencing my own diagnostic journey, I went on a hope mission to find others living with this disease. I made a facebook page to find others and how they were managing, because as a Nurse I had never heard of ATS even though I lost a sibling to it. But once I learned how to manage it, I found HOPE! I also found that those without medical literacy needed help understanding how to navigate the healthcare system. Soon I found an online support group and found my voice to be valuable, I am now a moderator for my support group. The Support network shares stories, hosts online events, etc . It is thrilling to be a part of this work because it not only helps others worldwide, but reminds me constantly I am not alone living with this very rare disease.
Currently I am working on sharpening my artistic hobbies,Advocacy skills, so that I may effectively share what I believe is a powerful story for the medical industry,and self training my “Still in training” service dog Atlas. I am passionate for early diagnosis for better outcomes where possible.
