This is going to be a long, heart-on-my-sleeve post…
CDH International was up for a Chan-Zuckerberg grant. We worked for months on it. It was to fund so much research for these kids, pay for the conference, push researchers to work together with patient groups, hire staff to help our drowning small staff and volunteers and most importantly, it would’ve raised more awareness than we could ever hope to raise on our own.
We made it to the final phase.
We dreamed of all the things we could do for research and families… all the patient services we could reinstate with research covered.
We dreamed of help to do all the things we can’t do already working 60 to 70 hours a week with our staff of 2.
We got the e-mail this morning.
We did not get the grant.
20 other diseases will get this amazing opportunity and I am very happy for them. Truly. And grateful that we even had the chance to dream. And grateful for my friends in the rare disease community who will get help for their patients that so deserve this. This is a big deal to have a foundation so global care about rare disease. Maybe others will follow suite.
But now, how do I turn back to my 1000’s of patients and say “I’m sorry, we still can’t fund research”… “I wish we could help pay to bury your 6 week old little girl, but there are no funds”.
For 25 years, I have rolled up my sleeves, fought back the tears and fought for other people’s children. I am worn out.
If you all only knew what I (and others) have given, endured, sacrificed, fought against to do this when it always seems like every odd is against us.
When sometimes even the very people who are supposed to care and help are against us.
We push on.
We even came back from the brink of going under twice.
We got hospitals to work with patient groups. But they want funding from us. Many will only work with groups who give them money.
We even got a position at the NIH. But they want funding from us for grants for researchers when they run out of money.
We even got the WHO to care. But they want funding from us too.
We have families who can’t afford gas, food, rent, funerals and medical bills. They NEED funding from us.
ALL the families, in ALL the countries, at ALL the hospitals.
But especially in countries where patients must pay for medical care and in third world countries where there is no care.
Most of our families in the United States have over $1,000,000 in medical bills. And they did nothing wrong to incur this debt. Even with insurance, there are still bills to be paid, work time lost, travel expenses, etc. They need help.
But I am out of tricks now.
We have been in contests.
We have applied for grants everywhere. There are so very, very few.
We are not a disease. We are not ultra-rare. We are not very common. These are the patients who fall in the cracks because everyone assumes others are helping when no one is.
We have tried to pull CDH charities to work together instead of compete so we can actually fund helping these kids instead of promoting logos and egos by wasting resources on doing the same programs. They want to help – that’s a good thing. But these kids need so much more than 5 totebags and 4 shirts and 50 Facebook groups.
We have tried to expand and help in Europe despite all the many obstacles thrown at us until we are bruised. We still push forward.
We have tried to get researchers to work together with all patient groups. We still push forward.
We have accomplished a lot. Miracles it seems in the grand scale of everything.
I mean, we started as 2 moms and a typewriter on my kitchen table with $100 and no clue what we were doing.
But it’s not enough.
We are the world’s largest and oldest CDH charity. Compare us to the Cystic Fibrosis foundation and Spina Bifida association. Our kids have crumbs. Crumbs of crumbs.
Same occurrence rate. Same number of patients and families.
The difference? Families work together. Researchers work with patient groups. Everyone is on the same page with the same focus – saving patients.
Don’t our kids deserve that too?
I believe with all my heart and soul that they do.
I don’t understand how so many can rally around any well known disease, any big multi-million dollar charity, any sick animal… and not realize there are whole populations that have no help.
I can’t imagine anyone could look at these sweet faces and think they aren’t worth fighting for, that they don’t deserve a chance to grow up too.
We need a minimum of $5,000,000 a year to do what needs to be done.
This year, I think we will have about $400,000. Out the door as soon as it comes in to pay for everything.
So this morning… we are devastated. We lost a $450,000 grant opportunity. But we also lost hope to finally help these kids as they deserve.
There goes our big opportunity.
But does it?
I’m writing this out of sadness, frustration… still some hope.
Hope that maybe if people read it, look at these photos of these kids that I post all the time… that they will care.
#GivingTuesday is Tuesday, December 3rd. At 8:00 am EST, Facebook is matching donations. They will probably reach their matching limit in 15 minutes as 1000’s of charities vie for the funding.
But what if everyone who cares about these kids was to help?
Because at the end of the day… it’s the people who know and love these children who will save them. The families, the charities, the doctors, the friends. We cannot expect a world who has never heard of these kids to reach out to help them… especially not when so many diseases and defects need help.
We are a tiny fish in a very big ocean without a big voice. So let’s get loud!
What if we had fundraisers and donations on Facebook and raised the money we lost from the grant? And Chan-Zuckerberg (of Facebook) still helped because donations are matched? Then those funds could go to helping families and not be restricted by grant guidelines.
Friends and family… please help by holding a fundraiser and/or donating at 8:00 am EST on December 3rd on my fundraiser or the charity page – http://www.facebook.com/cdhintl
CDH families… please help. Fundraise too. Donate if you can afford to do so. Post your child’s NICU photo in the comments. Tell the world about CDH. Tag yourselves in this post.
Help us get the world to care about these kids and care enough to fight for them too. ❤
Exhausted charity leader
Believer that good things come out of everything