When my friend, Matt Ellison, asked me to help him start an international non-profit for a disease that affected both of our parents, it seemed like a cool idea. Without much hesitation, I simply agreed to help. At the time it was just an idea in Matt’s mind and didn’t have any real limbs. We had a whole lot of work in front of us, but we had passion, accountability for each other, extra time and that young 20-year-old ignorance to ignore all the naysayers.
We were both disease advocates in the Huntington’s Disease (HD) space for a couple years. Matt being an active voice in the UK for young people. Me being a grassroots fundraiser in the USA. We didn’t have a whole lot of supporters. We didn’t have any advisors guiding our path. We didn’t have any experience forming, creating and running a non-profit.
I’ve learned that the feelings we had weren’t unique to us, but the same feelings that many non-profit leaders face, especially in the RARE Disease space. Whether you are creating a new non-profit or taking over as an organization leader, it’s an entrepreneurial battle full of ups and downs.
We have now been working on the Huntington’s Disease Youth Organization (www.HDYO.org) for nine years now, seven as an official entity. Without a few key pieces that fell into place for us, I am not sure we would have been able to positively impact the many lives that we have. Three full time employees working in different countries, youth camps on different continents, an educational website in 14 languages, and a platform that has allowed thousands of young people to fight back.
I have a lot of discussions with other people looking to either create non-profits or take over a leadership role and the in the conversations I typically stick to five simple buckets of what I believe helped HDYO get the legs we needed to take off.