For example, let's say 100 patients need care packages.1 group creates care packages at a cost of $100 each. That's $10,000.Then another group is created, a volunteer splinters off or an existing group likes how much goodwill and marketing care packages creates so they decide to offer care packages too and since the first ones are so popular, theirs are just like them. 2 care packages for the 100 patients!That's $20,000.Then another group. And another. And yet another. With all the same items in the care packages but different logos.You get a care package! You get a care package! You get a care package!(Try reading that to yourself with your best Oprah impression)That's now $50,000 in care packages.$50,000 in t-shirts, journals, bags, and swag for 100 patients.The patients loved the first care packages. And the second ones some too. But then they felt pulled by the competing care packages from competing charities.Do you know what sick, and sometimes dying, patients and their families need?Research.Financial Assistance.They do not need to market your charity with a t-shirt, 3 toothbrushes and bumper stickers with your logo. A logo that you took from one of the other charities because you didn't learn anything about trademarks and copyrights before you dove into making care packages with your name on them. I digress.So to recap... that's $40,000 that could have gone to research or helping families financially.$40,000 virtually wasted solely for competition.Everyone loses.
They could have worked together and created amazing care packages with all the groups contributing. Our charity works with 2 other CDH organizations, who contribute items to our packages. This saves them postage, us money from buying those items and it creates goodwill all around. This frees up funds for 3 organizations to meet other needs.
Another example is Awareness Days and Ribbons.How many times have you seen causes with more than 1 ribbon or more than 1 day?"How did that happen, Dawn?"Egos. Egos is how that happened.Competition before collaboration and patients.How many employee and volunteer hours do you suppose go into projects and events around an awareness day? 1000s.So if you have more than 1 day or ribbon for a cause and different nonprofits promoting different days, you are duplicating man hours.1000's of hours lost.
Landmarks receive requests for light-ups and will only honor one request so you have one (or more) charity competing to get their request in first against another charity. Not only is that competing, but it's highly unprofessional and unethical, even if you package it up with a pretty call and call it "raising awareness".
And you have a very confused patient community who feel like they need to "pick a side". You also have angry community members who are disappointed and upset that the charities who are supposed to be serving them are taking actions that actually hurt them.Awareness is muddled. The public loses interest. Nonprofits lose respect because they look like toddlers fighting over a toy.Patients lose.Less awareness = less research.Voices speaking the same words together, at the same time, in harmony are more powerful and louder than many voices screaming their own names just wanting to get the most attention.
Our charity works with over 25 other CDH groups to raise global awareness on day that was chosen together. We all use the same ribbon. We all request trademarks and proclamations for the same day. No one owns the day. No one owns awareness. No one competes.
Except for 2 who chose different days that honor their charities and compete against all the other charities for recognition of their day instead of the global awareness day. And the patients in their countries lose.
Inevitably, when one charity is in a contest and requests support from the community, at least one other charity thinks that's their opportunity to gain community support too and jumps in to the contest.The community vote is divided.Neither charity wins.They both look ridiculous and uncollaberative.
Our charity has been in contests and other charities have supported us and vice versa. If we see another CDH charity in a contest, we never, ever join the contest too. Integrity and the respect of the community is far too important than to beg for votes against another charity.
* Research
This is an example that I've heard time and again in the rare disease nonprofit sector:
The community has a very active research organization that they support and participate with and then along comes another organization with a very ambitious leader who thinks that, they too, can participate in the research world and gain admiration, opportunities, money, etc.
99% of the time those people have no experience, no hands-on advocacy experience, and have been in the community for a hot minute.What they do have is an ambitious attitude of entitlement, some desperation to get their own patient help (aren't we all desperate for help?) or remembered above all others and they don't believe that the other organization - which has invested years building relationships and pushing for research - is fast enough or good enough. Therefore, they feel justified and often "chosen" to step in to "do better".
"Savior syndrome" is real.
But, they never do better.They get in over their heads and the only way that they can succeed is by throwing around a lot of money or bashing the original charity because they have nothing else to offer themselves.
Sometimes, researchers will "legitimize" them by "trying to support everyone", taking their money, contacting their patients for research and supporting their "research". These competing groups are new to research and do not understand that:
1) Researchers will take anyone's money.
2) Researchers are not our personal friends. It's business. It's not high school. They aren't sitting at the "cool lunch table" by having a conversation with professionals who are nice to everyone. They have the same conversations with the "competition".
3) Researchers already work with those patients because most communities have patients in all the charities. These groups aren't actually adding any new subjects or data.
4) They are wasting the researcher's time when they have to talk to competiting groups. Valuable time.
5) The researchers all see the competition, the nastiness, the unprofessional behavior on social media and it hurts and embarrasses the whole patient community.
6) Researchers are not personally invested in the patients. They are our children, siblings, parents, ourselves. Our loved ones. This is their research. Their careeers. They can walk away from our patients and work on other research without looking back. They often do.
7) Some very unethical researchers will egg on competition, thinking that it will gain them more funding if organizations compete to see who can fund the most research. But they are tapping the same donor pools so there's no extra funding and this tactic only divides the community more and patients and families pay the price, not researchers. This also destroys relationships with that researcher and the charities that they help attack by behaving this way and it hurts their reputations in research as well to be so greedy that one would hurt a charity. No one wins, honestly.
8) Most researchers eventually get fed up with drama and patient communities who cannot work together to fundraise, gather data, participate in studies. There are 100's of other patient communities that do work together and can offer organized patients, data and funds within a positive, collaborative environment that will bring enough funding to keep their labs open and their employees paid the papers published. Competing, unorganized patient groups are very unattractive next to the ones who have their acts together and one focus in saving their patients. Who would you rather work with? Who would you rather gamble your career, labs, university reputations, time, and money on? Exactly.
The competing people also do lots of illegal things - like libel, slander, breaking HIPPA, GDPR, threaten others, bully, etc - because they know no better and they must save face and cannot fail.
They stalk other charities, reach out to their research partners, join the same organizations, schools, groups, conferences that they do. They insert themselves into conversations. They gossip. They cause drama. They make research and industy uncomfortable. They criticize other organizations but then do exactly everything that they have done / are doing.
They duplicate registries.
They compete for seats at research tables.
They gossip with researchers, trying to pull them to "their side" with hopes of edging out their "competition" from research.
They scream to be heard.
They post so much drama on social media. So, so much drama. They embarrass everyone, including themselves. They destroy the public's trust in charities.
They pull every narcissistic abusive trick in the book, causing emotional stress to the people they attack.
They cost both organizations money when the first organization hits their limit and hires legal respresentation to protect themselves, their work, the patients and the research community.
They pull patients to support them.
They compete for funding. Often applying for the same grants and sponsors.
They make the whole community look unorganized.
They make patient advocates look selfish and unprofessional.
They cause researchers to distance themselves.
They cause donors to go elsewhere.
They turn patients off of research altogether.
This devastates research.
This devastates patients.
This costs lives.
And all the while, they are so proud of every tiny accomplish they achieve without ever looking at the bigger picture and all the destruction that they have caused. Because it's about competition. It's about them. It's not about the patients.
Currently, our community research has been devastated by amateur competition. It's cost our children funding, time and lives. Researchers have told us this time and again that when communities are divided by competition, their patients are rarely saved. We are actively, respectfully, responsibility, honestly, and professionally trying to repair the damage caused by others. Our children deserve research.
I could give you 100 examples of how nonprofits waste money, time, and resources and inadvertently divide patient communities because they choose to compete instead of collaborating.
When you view other advocates, leaders, organizations, or patients as your competition for some golden target, you actively create dysfunction in communities that need to work together to stop the diseases that destroy them.
You become an ally of the disease that you say you are fighting against.
Competition is for losers who can't win without hurting others.
For any community to succeed, all parties much collaborate for the greater good.
