Patient Leader Certification: What's Your 60 Second Pitch?

Hi, My name is Sandy Weicher and I am a thriving Bladder Cancer survivor. Bladder cancer is the cancer that no one has heard of - I know I hadn’t. I was one of the lucky women - I had one drop of blood in my urine and my primary care doctor sent me immediately to a urologist. I was diagnosed with T1 High Grade Non Muscle Invasive bladder cancer. Because it was non muscle invasive, I was treated with immunotherapy (BCG). I was cancer free for 7 years and while I know that bladder cancer has the highest recurrence rate of any cancer, when I hit five years I thought I had it beat. Wrong! Right after retiring and moving to NYC at my yearly surveillance appointment with a brand new urologist, a tumor was found. It was the same T1 High Grade NMIBC, but more aggressive. We went immediately to bladder removal. There are three diversions to get the urine out of your body when your bladder is removed. The most common is the Ileal Conduit, or the external bag. I could not imagine having a bag of urine outside my stomach, so I was extremely fortunate to have a surgeon that did the other two options. He recommended the Indiana Pouch where he built me a new bladder from various parts of my small and large intestine. He then created a channel out to a stoma (opening) in my abdomen. I empty my new bladder with a catheter through that stoma at various times throughout the day. It is painless and simple. While the physical recovery of this major surgery was tough, the adjustment to my new normal was even tougher. I struggled to find people who had the Indiana Pouch to talk to and share with. A year after my surgery I started a monthly Zoom Indiana Support Group. It has been such a gift to me to have a community of people to share my journey with. I am passionate about young women (and men) understanding that blood in your urine is not normal, and is not a UTI. I am passionate about people having options for their diversion when they have their bladder removed. The Indiana Pouch is a great option and works very well for many of us. And, I am passionate about how impactful support groups are for people living in recovery, and if you can’t find one that fits your needs, do what I did and start one!

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 !

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.