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!
Hi, I’m Rachael, a patient leader, disability advocate, and content creator. I live with multiple sclerosis and use my platform to amplify real stories from the disabled community, challenge stigma, and push for accessible change.
Through my work, whether it’s social media advocacy, blogging, or public speaking, I focus on bridging the gap between patients and policymakers, making sure lived experience isn’t just heard, but valued in decisions that affect our lives.
I bring an honest, creative, and solutions-driven perspective, grounded in both personal experience and years of community engagement. My goal as a patient leader is simple: to turn challenges into change, and ensure every voice, especially those often left out, has a seat at the table."
Hi, I’m Leia Ali—an HS warrior of 28 years and a patient advocate in remission. My journey includes biologics, surgery, and a holistic routine of supplements, yoga, and meditation. I know the fear, the flare-ups, and the isolation—and I know the power of evidence-based care, community, and self-advocacy.
I founded the Empowered HS Goddess Foundation to turn pain into purpose: educating patients and providers, funding resources, and connecting people to compassionate, practical support. As a caregiver and organizer, I translate lived experience into action—building programs, raising awareness, and equipping others to speak up at the doctor’s office, at work, and at home.
What I bring: a credible patient voice, program design and training skills, and a relentless belief that people with HS deserve dignity, access, and joy.
If you’re a clinician, policymaker, brand, or fellow patient, let’s partner to expand access, elevate research, and make daily life easier. Together, we move from surviving to thriving.
Hi there, I’m Amanda & I’ve been on quite the journey since my fibromyalgia diagnosis back in may 2009. I’ve learned so much in that time about myself, the condition & about the chronic illness community & have experienced a LOT from the lows of career loss through to the literal highs of charity abseils &zip line challenges!!
I’m keen to raise awareness of fibromyalgia & to increase understanding of the condition. I’m also passionate about supporting people with fibro and other chronic illnesses because i know myself the power of community and of shared knowledge in finding hope & a way forward
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.
