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! My name is Eric Butcher. I have a rare, genetic condition called alpha-1 antitrypsin deficiency, or Alpha-1 for short. This protein deficiency affects 1 in 100,000 people and can cause both lung and/or liver disease. I am one of the lucky ones who is affected by both. There are currently few treatments and no cure for Alpha-1. Having been diagnosed in 2011, I have been active and involved with the Alpha-1 community and Foundation since 2015, working as a Support Group Leader, Advocate, and Peer Guide. I was employed as a Consumer Advocate by industry for several years and am a public speaker and policy advocate. I have spoken on behalf of liver-affected Alphas at the FDA and presented to 8 different support groups and at the Alpha-1 Foundation National Education Conference. Later, in 2022, as a result of Alpha-1 Cirrhosis, I was also diagnosed with Adrenal Insufficiency, also known as Addison's Disease, requiring a daily maintenance dose of corticosteroids to control symptoms and to simply stay alive. My goal is to help to empower others to thrive, and not just survive, their rare and chronic disease diagnoses. I hope to educate and raise awareness of the struggles of rare disease patients and of the rare diseases themselves.
Hello my name is Elisa Glass, I am not only a caregiver for two persons, my 100% disabled veteran spouse and my veteran son who suffers from Hidradenitis Suppurativa (HS), I am also a patient. I have Dermatomyositis a skin and muscle debilitating rare disease. I recall with such accuracy, in January of 2016, lying in the hospital bed in excruciating pain and unable to move, several doctors entering my room and telling me I have Dermatomyositis, and said “there is no cure and women of color tend to die sooner”. After weeks of lack of information, distress, confusion, and having lost so much, I made up my mind to become a patient advocate. I decided to focus on Pharma and FDA Interactions. I started and continue to work on ensuring all patient populations especially underrepresented groups are involved with research and decision making. I provide education to patients about their rights and ways to engage with clinical trials or initiatives. I act as a liaison between patients, pharmaceutical companies and the FDA. I plan to continue my work and expand my civic engagement with all political departments. Change does begin with me !
, it's outrageously bad bedside manner to meet a patient like that, with horrendous news, no information or options. I am glad that you launched in to advocate and educate so that no one had to be met as you were. And, yes, the political education is so important, especially now. Thank you for all that you do! - Warmly, Donna (Team Member)
Hi, I’m Dan Noyes, and I bring a deeply personal lens to patient advocacy. I live with epilepsy and chronic health conditions, and I know what it’s like to navigate life when the road ahead feels uncertain. But I also believe fiercely in the power of living forward. With the help of my service dog, Gabe, I volunteer at hospitals to connect with patients — especially those who are also walking with invisible or complex conditions. Sometimes, the most healing thing isn’t a treatment plan — it’s feeling seen.
My work blends compassion with innovation. I’m using AI to build tools that support people emotionally and practically as they manage chronic illness. I’m not just imagining a better future for patients — I’m actively building it. What makes me different isn’t just my technical training or my story. It’s that I show up — every day — with a mindset of empathy, hope, and practical forward motion. I believe the past may shape us, but it doesn’t define us. Together, we can reimagine what it means to live well — starting now.
