Lessons Learned Creating & Leading a Non-Profit: Article 6 of 10

Article 6 of 10:

Lessons Learned Creating & Leading a Non-Profit – what I would have done differently based on learning and wisdom over the years.

To be clear, I don’t have any regrets when it comes to my time helping lead and run the Huntington's Disease Youth Organization. I led with passion to help young people on my sleeve. I wasn’t perfect, but I don’t intend to be. We always made decisions that we felt were right for young people before considering if it was right for HDYO or ourselves. Just because I don’t have regrets doesn’t mean I wouldn’t do things a little differently. I gained wisdom over the past ten years and I wish I would have had some more in the early HDYO years. In this article I’ll share a bit more about that gained wisdom, how I would have applied it and what I would recommend for other entrepreneurs starting small non-profits. 

1)      Find an advisory board or group of mentors to help guide strategy and board development

I had plenty of people who provided guidance, but I didn’t have a core person or group that I could turn to who had non-profit experience that I could lean on. I wish I did. Unfortunately, I relied on google searches and random articles to help guide me. These are valuable, but they aren't great with specifics. There was a core group of us who started the organization and our first board of directors, but none of us came with any non-profit creation/management experience. Having a grass-roots rare disease non-profit mentor to learn from or others with non-profit board experience would have been instrumental in saving a lot of time and headaches in terms of.... board creation and management, accounting, HR services etc.  There are now groups like Global Genes and National Organization of Rare Disorders (NORD) who help guide and counsel groups like HDYO. I wished I discovered these groups earlier and got involved. For any entrepreneur looking to create a non-profit, find a group of experienced individuals beyond your board of directors that you can go to and lean on for strategic guidance and insight.

2)     Create a stronger and more reliable financial business strategy

I used the word “entrepreneur” in the previous paragraph on purpose. I don’t think non-profit creators get enough entrepreneurial credit, but it could also be their own fault. If you are creating your own non-profit you are 100% an entrepreneur. Just because you identify as a non-profit does not mean you are not running a business. You may not be trying to get on the front cover of Forbes, but you’re still running a business. I say this because I don’t think enough non-profit creators think as strategically as they should when forming a business.  I definitely didn’t, but I wish I would have, especially around finances. How can you create a product that fits your non-profit’s mission that creates sustainable long-term funding? We, and many non-profits, for too long just relied on a few generous people who either gave their own funds or put in time to hold fundraising events. It was kind of like a “lets say our prayers and hope people continue to be generous”. It’s not easy to raise money via general donations and for small groups, unless you have someone with a wealthy Rolodex, it’s a rough journey. Even if you put a donate button on your website or get people to use AmazonSmile or host Facebook birthday fundraisers, it’s hard to generate enough funds and equally as difficult to forecast. Could HDYO have sold cool HD T-shirts, or put more focus on growing a YouTube channel to generate ads, or providing a service to the community that clinics or industry would have seen value in to provide long-term funding – I am not sure if any would have been successful, but we never fully strategized our financial model and that became something that kept me up at night. I know it keeps up other small non-profit leaders. My biggest learning, don’t just think that the only way to get money for a non-profit is through donations….think harder!

3)     Create stronger partnerships that are a win/win for everyone

Don’t re-create the wheel and learn how to clearly differentiate yourself. Most likely there are others out there trying to do something similar to what you are planning. Maybe not identical, but with limited resources it makes the most sense to try to collaborate wherever you can. For us there were other HD groups that offered “similar” programs. What we struggled to do was clearly differentiate HDYO’s offerings. We struggled communicating this to the groups that offered similarities and the general HD community of families, physicians and partners. This created confusion on all levels. HDYO was definitely successful in collaborating in many areas worldwide, but the misses were frustrating. Even beyond HD, there are a lot of other groups doing many great things we should have teamed up to collaborate on as issues that impact the HD community are similar to many other conditions. I unfortunately see a lot of competition in the rare disease advocacy community and it doesn’t matter what condition I am talking about. There is a lot of personal passion that goes into non-profits work and sometimes we let that get in the way. I know I did a few times, but it’s lessons learned for myself. Reach out across the table and understand what the goals are for others. Communicate, communicate and communicate on a regular basis with others and try to creatively and strategically find common ground to collaborate.

These are my top three lessons learned. They aren't regrets, but things I wish I would have done a better job at. Lessons I have learned from and will take with me into whatever I am working on next. 

I’d love to hear from you..... Comment below your top lesson/s learned while running a non-profit…

Tune in next week (or when I finish writing) to article seven that will discuss recruiting volunteers and the challenge it entails to find the right people to get on your bus! God Bless - BJ

The last four articles……

7.       Finding People to Take Your Bus Ticket – taking things off your plate and trying to find others to get on the bus to help.

8.      Managing “Volunteer” Time – wanting to take over the world and realizing you’re a volunteer with limited time.

9.      Sleepless Nights – the things that really kept me up at night when running a non-profit.

10.  Smiling Back Into the Mirror – Ability to pat yourself on the back and be proud of the efforts with no regrets.