Lessons Learned From Starting an Awareness Brand & Finding Your Unique Voice in Advocacy

My health journey began like any other - I was a healthy, active, young adult with big dreams and ambitions for my future. That all changed when I started experiencing concerning symptoms that didn't add up. After years of doctor visits and unanswered questions, I was diagnosed with a rare disease that flipped my world upside down.

Suddenly, my main focus wasn't chasing my goals or enjoying my 20s - it was just trying to survive each day. I was lost in the chaos that had become my life. I felt isolated and alone. I didn’t fit into my old life and I had no idea how to navigate what I was up against. I constantly felt like I was drowning and slowly losing pieces of myself.

In these darkest hours I made a decision: I would create a space so no one would ever have to feel as alone as I did in that moment. I didn’t know it at the time but I became a patient leader that day. Here’s how I found my voice and the most important lessons I have learned from creating RARE, my advocacy brand.

Finding my voice

August 2016, I was engaged, living on Capital Hill, DC, a well respected therapist in a job that I loved, 27 years old and I was in the best shape of my life. I was running half marathons and midway through training for my first full marathon. It was a hot day in DC the air was thick and heavy as I started my run so when my feet began to burn I thought nothing of it. That run lives rent free in my mind as I have spent years trying to backtrack when my body began to betray me. I was an abnormally healthy child and young adult, no surgeries, no broken bones, we’re talking the common cold was the extend of my understanding of poor health.

It never accorded to me that you could wake up sick and never get better. The idea of “chronic illness” was never a thought when I finally began to see doctors and explore what was happening to me. Doctor after doctor, test after test, finding out what was wrong became my full time job and took over my identity.

I began to lose a grip on all the things that were paramount to who I was

I struggled to maintain friendships and realized that no many people were showing up for me when I wasn’t the life of the party. The brain fog made connecting with my clients near impossible, I came off unprofessional and shattered not to mention working under an administration that actively told me I was lying about my condition. It became a version of mental warfare. I began to hyper-fixated on my short comings believing if I just tried harder I would meet the expectations and if I did that, they would believe me when I say somethings wrong.

To add to the chaos, I was getting married in seven months. My wedding planning became my safe haven and I started to create things that I wanted at my wedding that would give it a personal touch. I began to learn how to do different DIY crafts and found that I was getting really good. It allowed me to connect with myself again after a long period of feeling detached and dissociated. I kept learning and exploring things I never thought I was capable of.

Time passed

Fast forward to September 2018, still in the thick of doctors, negative tests and depression. My wife and I got into another fight on our way to the doctors. This had become common as I didn’t look sick and I couldn’t explain what was happening to me.

Creating RARE.

While going back and fourth an idea hit me like a mac truck: if I could wear my rare then I would be able to start the conversation. By the time we got to the waiting room, I had several pages of notes outlining how I was going to create RARE. From that moment there was no stopping me, I spent every available hour working on bringing this to life.

RARE. saved me it became a space for me to show up authentically and an outlet for me to process my emotions and experiences. Creating was my way of reconnecting with the world around me and I proudly wore my creations and watched as my clothes started the conversation giving me the opportunity to explain my unique experience. I began to promote the launch of RARE. and sharing my story online. I was overwhelmed by the number of people who could relate to my experience. I started receiving messages and comments from people across the world who were too struggling in silence.

It turns out I wasn’t alone after all, I just had to be brave enough to talk about my experience. I realized that telling my story in my own beautifully RARE. style was the best way I could help others feel less alone. The clothing brand I was launching became a community before a single item hit the website.

It has been incredible to watch this community blossom over the past few years. The blending of all types of humans and willingness to love the uniqueness of one another is a truly powerful thing. RARE. was initially started with just my voice, but has grown to a collective voice much more powerful than I could have imagined. The RARE. “herd” continues to grow louder together, breaking down stigmas, showing up for each other and joining together to bring the invisible-visible.

The connections, shared stories, and growth I have witnessed from the community as a whole and each individual zebra has been a blessing. Despite all that my disease has taken from me, I am reminded daily how much I have gained.

Find your why

I often get asked how I was able to build rare, be a patient and maintain my full time employment, the answer is simple. I knew my why.

I continue to raise awareness and build RARE. for the version of me that felt alone in her darkest hour because no one should have to walk alone.

Reality is that any thing you want to do will come with a fair share of struggles and most days it will feel like a waste of your time and on paper you may be right but that is where your why comes in. Having a strong why will always help you find what you need to continue. It will also help you know when its time to evolve.

The best advice I can give to anyone starting out is to find your why, clearly define it and connect it to your story. Go deeper then the outcomes you want to achieve and find the thing that will make you keep going after you have stumbled, failed and fallen.

Lessons learned

My patient advocacy journey has been filled with challenges but it has also provided me with invaluable life lessons that have shaped me as a person. While each person’s journey will be unique here are my top 7 tips for those looking to find their patient advocacy path:

Find your why

I often get asked how I was able to build RARE., be a patient and maintain my full time employment, the answer is simple. I knew my why. I continue to raise awareness and build RARE. for the version of me that felt alone in her darkest hour because no one should have to walk alone. Reality is that any thing you want to do will come with a fair share of struggles and most days it will feel like a waste of your time and on paper you may be right but that is where your why comes in.

Having a strong why will always help you find what you need to continue. It will also help you know when its time to evolve. The best advise I can give to anyone starting out is to find your why, clearly define it and connect it to your story. Go deeper then the outcomes you want to achieve and find the thing that will make you keep going after you have stumbled, failed and fallen.

You are not alone

I felt so alone and isolated, like no one could understand what I was going through. By sharing my story, I realized how many others are on similar journeys. There is power in realizing you are not the only one and being brave enough to share it with others.

Vulnerability breeds connection. Don’t be afraid to be exactly who you are. When I started sharing my story through social media, podcasts and partnerships I had no idea what I was doing often dropping my phone while live and always frazzled. This allowed people to connect with me and related to the real and raw version of myself that they saw. Allow your vulnerabilities to be your superpower.

It made a difference to that one. It easy to think what’s the point, I have no followers, my story isn’t interesting or someone is already doing what I want to do. Don’t partake in your own defeat. You are what makes you unique. You don’t know the life you will save, the people you will impact or the change you can make by sharing your story. Your story is someone’s survival guide. Go tell it.

Progress takes patience

The expert at anything was once a beginner, give yourself space and grace to get where you are going. Healing, building community, enacting change - it all takes time. Celebrate small wins along the way and take every experience as an opportunity to learn, some of my biggest mistakes with RARE. have propelled my personal growth and the brands success.

Ask for help, show support & pay it forward

Very early on I realized the incredible kindness of people who wanted to see me succeed. I am forever grateful to the long list of people who supported me, took a risk on me or gave a space on their platform to grow mine. Ask for help when you need it, it’s okay to not know it all right now. In the same vein I want to encourage you to show support to the creators, artist, bloggers, podcasters and people doing this work. Supporting others work does not take away from yours.

Give the like, share, comment and promote others. Last lesson I want to pass on is to pay it forward when you get where you are going, help new creators, share the tools that have made your life easier and invest time in the future patient leaders. None of us can do this alone.

Your story matters

Your experience is valid. Our narratives will echo far beyond today, improving lives for generations to come. This is the power of patient advocacy. Your voice can change the world. SHOW UP. STAND UP. SPEAK UP. You have a herd behind you here to help every step of the way.