Sharing a Rare Story

Many people see today's date, 3/14. and think Pi, or pie... I did some looking and according to www.nationaldaycalendar.com in addition to Pi Day it is also Write Down Your Story Day. It got me to thinking about the why, why do I share what I share. And then I was trying to secure a fundraising source for the small nonprofit that supports those with my son's illness and it emphasized even more why I tell my story and why those with rare stories need to share their stories when they are comfortable and ready. Please know that as I share about my son, I use discretion, but that I have also checked with him and he has said it is part of him, makes him who he is and it is fine that I share.

I have shared in another post that we are hard at work finalizing details for Adrenal Insufficiency United's upcoming conference. One of the things that I am planning on at this conference is having a table set up with opportunities for people to raise funds in a variety of ways. In recent years, raising funds for nonprofits has become more of a challenge - sources are strapped for money, expenses are increasing and finances for both are being pushed to their extremes.

After each conference we have had people who are so excited about the next one. Where will it be? When will it be? When can we all get together again? But what few realize in those moments of excitement is the hard work that falls in the hands of a few to make it happen. The cost of one of our conferences is over six figures - the needs for grants, gifts, fundraisers both large and small are essential to a nonprofit just functioning, but to putting on a large event that serves a national population with sessions streaming worldwide the need is even greater. So, while people are at the conference and excited about it, see and feel benefits of us all being together, I want them to also think about how they can help so that we can meet again.

That being said I contacted a large chain yesterday to see about getting on their list of nonprofits that earn money just by shoppers putting in their phone numbers as they check out with their purchases. Not a huge way to earn money, but again every little bit helps. This particular chain has different divisions in different parts of the country that each have their own versions of their charitable donations. I completed all the forms for the region where I live and emailed the paperwork. Within minutes they responded saying they would forward it to the division responsible for the address that the nonprofit is registered under. Now, I completely understand where they are coming from and am not admonishing them at all. I explained that I was located in the region that I applied for and was taking on a leading role in fundraising, am secretary and parent representative on the board.

This corporation responded saying that it is their policy that with national organizations they give funds to the area the nonprofit is registered under. They can register for other areas if they have chapters registered and operating in other states. And this is where sharing my story and people understanding what rare disease life means. I explained that we are a rare disease organization and that by the very nature of being a rare disease organization the way we find others is through the internet, not in meeting others within our state or geographical area. For example, when my son was diagnosed with Addison's Disease I searched high and low for other teens in the state we lived in at the time - I found one. That is not to say that there was only one, I was searching on social media, but I doubt there were more than 5-10. There was no way we could have a chapter to provide the kind of support that we provide on the internet for parents of children with adrenal insufficiency. Even if there were a few more in a state, the idea that there were more within an area to have face to face meetings would be hard.

Again I am not saying anything bad about this corporation. You cannot make decisions about something you do not know. If it does not fit into their policy, I understand that they cannot do it. But I had a choice, I can either just accept that they do not make charitable donations for an organization that does not have chapters in the state, or I can share my story about why we do not. Share with them about how someone with a rare disease cannot just walk into a local chapter of their rare disease support system and find others going through what they are going through. Because we are alone rare, if can be hard for connect with others with similar stories. But because there 25-30 million Americans with rare diseases it is important that everyone start to consider the impact that the rare community has, could have and should have in the world at large.