When it comes to curing children of rare diseases, there is no room for competition. With passionate leaders taking the reigns, with so few soldiers willing to march–it can seem to many foundations that fighting the disease is just one mountain and competing for resources means knocking down anyone, including other organizations, who stand in their path.
It’s been almost three years since starting my non-profit and I love meeting new people whose mission and vision is to help others. I have always said that –even with my foundation– I have never worn blinders. The idea that all for one and one for all can be a suitable description for the current temperature of the rare disease community is simply inaccurate.
And maybe it’s finally time to bring these issues out from behind the curtains of the conference rooms and in to the light.I’m speaking out in hopes that those who have lost focus on the importance of their mission can, with a gentle reminder, loosen the death grip around their grant applications and find a way to cope and pool the community’s resources at large.
I was asked once how I could have an event with another foundation that wasn’t specifically for the same cause as my organization’s. Wasn’t I angry about wasting resources on something that wasn’t relevant to my specific cause?
Now anyone with a child who has a rare disease knows this: our kids may not have the same cells or mutations, they may not take the same medications or treatments–but my child dying doesn’t make your child dying any less significant. When you start a charitable foundation in the health community your goal is to impact the lives of others who are struggling, all lives.
Would I pull back the hospital curtains around some other patient’s bed, grab their IV and say– “I need this more than you?”
What’s the difference between that scenario and denying another rare disease organization the publicity or resources that I have for mine?
Coming together in life to better others is key in the world of non-profit organizations. When two different foundations come together they’re able to join forces—their audience, their patients, their outreach to create the biggest and most effective picture of awareness for both.
There are always going to be people who are connected to your cause. Some more than others, and what I know is that if people prefer to give their money to the other foundation, that’s okay.
Each dollar is drawn to help for a reason and your cause may not be something they can relate to at the time. However, they have been made aware of your cause and may be more inclined to support you down the road or share your information with someone your resources may impact.
The complaints can get disgustingly petty. Starting similar charities and posting as a closed group, taking information off another’s web site without permission, being disappointed when another gets recognition within the same disease category–the bottom line is that someone is getting helped. We can’t get hung up on greed.
My advice is to make sure you know that you don’t lead to be above, you lead to promote growth for others.
When people start competing with you don’t allow it to get to you, stay focused on your goals. Stay focused and remember your purpose. The moment you allow yourself to be tangled in their web you have not only lost your focus, you’ve lost valuable time to make a difference in another’s life.
Founder StopCAIDnow,Inc“My name is Lisa, I am a mom of three wonderful and loving souls. I have two sons with different illnesses and started the first foundation to cover all Childhood Autoinflammatory Diseases. I coined CAID to help all children who suffer diseases such as my son Brody. My oldest is not fully diagnosed but has a connective tissue disease with mitochondrial findings. What melts my heart is a child’s laughter. What breaks my heart is anyone suffering especially children or any child/person who feels limited.”