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. 

Lisa Moreno-Dickinson
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.”

Learn more about Lisa and stopCAIDnow you can visit the following link:

4 thoughts on “A Message for Organization Leaders: When Non-Profits Start Competing”

  1. John Brantley Hooks, IV says:

    A thoughtful and beautifully written article that reminds us that it’s co-opetition not competition that promotes growth for all non-profits. TEAMLisa through her work on the Global Genes Project and Stop CAID Now Foundation proves that Together Everyone Acheives More (TEAM).

  2. Melinda smith says:

    It breaks my heart that you have had to deal with this crap from such short sighted ignorance. Stay strong! You are fighting the good fight!

  3. Lisa says:

    Thank you Melinda sad to say I speak on behalf of so many who have been faced with this issue. I was truly upset when I witnessed it first hand and I was blown away. I was more bothered about the intent vs the actions and about how one spoke of the families they were supposed to help. As you can see I have no tolerance for this and will always use my VOICE to better our world and stand for what is right. We in the non-profit world could do so much more together….as I said ” My advice is to make sure you know that you don’t lead to be above, you lead to promote growth for others”. We have many wonderful honest leaders out there and we need to encourage that helping is not a competition and never to lose focus on your mission. I honor all who are making a difference in our world. I welcome all and wear no blinders, never have and I never will ~ Blessings

  4. Peter Wilderotter says:

    When Christopher Reeve was injured, he began to put forth a notion that a cure for spinal cord injury absolutely can and must occur. In the early days, he was met with protestors in wheelchairs who felt that talking about a cure would detract from their day to day needs. Chris engaged them but didn’t buy into it. Dana Reeve cared very much about a cure, but her foremost concern was that she had no place to turn when Chris was injured and she created a Quality of Life Program to help in the here and now. And she was met with detractors who felt that this approach would minimize the urgency of the cure work. Nonsense they said–
    A few years later, they realized that having their own Foundation wasn’t the best way to approach it– they looked around and researched who was doing the best research, the best colloborations and they discovered the American Paralysis Association (APA)– and they merged their Foundation in along with the Quality of Life program. And APA was smart enough to see that Chris had the better name and they became the Christopher Reeve Paralysis Foundation. And along every step of the way, there were detractors. But Chris and Dana never cared.
    If you were to throw Chris & Dana’s qualities into a blender, what you would get is Lisa Morena Dickinson– a women of superior vision and unique talent to realize that there is more that binds us together than divides us. And here’s the secret quality– Chris and Dana had different visions– but what was overriding was their love and respect for each other– truly the love story of our time. And that’s Lisa’s greatest quality and what comes through in her piece– Love and what we are trying to improve– the human condition– is what should drive us. Ego messes everything up. And she lives that truth.
    We can accomplish far more together than we can apart. Keep on yelling that Lisa
    Peter Wilderotter
    Christopher & Dana Reeve Foundation

Comments are closed.