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a backstory on how a woman started her rare disease nonprofit

My Rare Disease Nonprofit - How I Started the Couch Pennies Foundation

I watched the YouTube makeup artist Tallia through her entire journey from the minute she posted her first video to the very last. I watched her whole story unfold right before my eyes, along with hundreds of thousands of other people. I remember the long break she took from YouTube, and I knew something was wrong.

Finally, her family posted and said that she wasn’t doing well. Her neuroblastoma had metastasized to leukemia. There was nothing further that she could do after fighting cancer for the majority of her life. Tallia finally gained her wings on July 16th at 11:11 AM. My soul as a young child was crushed.

This was the first loss that I experienced so close to me - only it wasn’t a normal loss. This girl had no idea who I was, yet I followed her whole story.

My rare disease nonprofit idea never went away

After she passed away, the idea of Couch Pennies always sat in the back of my mind. My goals and objectives in life shifted a bit. I stored Couch Pennies in the back of my mind, always knowing that it would happen. I just knew it wasn’t the right time yet.

Then comes August 9th, 2017. I was diagnosed with NMO, a rare autoimmune disease, and the idea of Couch Pennies immediately flooded my mind.

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Spending nights thinking about Couch Pennies

I lay awake many nights due to pain. I was on pain medication every two hours, so I never was able to get any sleep, but I did have time to think.

I thought of all of the people like myself that are struggling. All of the people like Tallia and so many other stories that we will never hear about after being diagnosed. I really struggled with my new path in life. When I was 19, I thought my path was trying to take track and field as far as I could. I wanted to become some kind of fitness model and then become an athletic trainer for Olympic athletes. When I was diagnosed with NMO, that plan went out of the window.

Up all night

At night I would lay awake, thinking about how I was going through what Tallia went through.

Just a young adult who was cursed with a bad bill of health.

My mind would race, and I would find myself staring into the mirror for hours, trying to make sense of it all. One night, it hit me. I could no longer pity myself. I had to do something about this helplessness I felt.

I began to jot down the struggles I encountered while living life with a rare disease. At this point, I don’t know anybody with the same disease as me - or anyone with a chronic illness, for that matter. Just Tallia.

Flashback: high school

Let's go back to who I was in high school. It just so happened that one of the people that I thought was the closest person to me left me in the dust. I was dealing with the hardest thing I’ve ever dealt with in my life. I was thankful for his ex-girlfriend messaging me on social media. She had a chronic illness too. She also saw the treatment I was receiving from people that I thought were my friends. She experienced the same thing.

Connecting with someone who knew what I was going through

We met up and began to talk about our struggles as chronically ill people, and I watched her disease completely separate from mine. We were facing the same struggles and obstacles being young and chronically ill. At the time, I didn’t want many people to know what I was going through.

Being inspired to share my story

She would tell me how she met an amazing community of people on Instagram simply by posting her story and sharing the struggles that she goes through being a chronically ill young adult. It was because of her that I found the courage to make that first post. I forever thank her for that because this is when my advocacy journey really began.

Ideas into reality

Taking a look at all the things I went through and now seeing other people go through the same thing, I broke out that list of ideas that I jotted down. I started to turn ideas into answers. Answers on how we can better the community and be more inclusive. I wanted to find ways to advocate not only for the diseases that we fight but also for the diseases that other patients have.

After accumulating a list of experiences in the issues that we go through in the rare disease community, I knew what I had to do.

In November 2018, Couch Pennies Foundation started operating as an unincorporated nonprofit association, for people with a rare disease.

The story of Couch Pennies Foundation had begun.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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