You Are Reading

An Important Message on Research from the CDHi President

0
Uncategorized

An Important Message on Research from the CDHi President

Excuse the rude meme…. we are trying to get your attention.


I’m going to be blunt this morning….


I opened up my e-mail this morning to read a letter from a government official we have been working with for years who is asking our charity for money to fund a project that might help CDH patients.


The government. Asking our charity to fund their research.
The government.


Earlier this year, I was told that another government entity in another country needs $300,000 to further their CDH work and they are waiting on us to proceed.


We consistently have universities and labs coming to us asking for money.
I have always said that It is US (the families) who will end Congenital Diaphragmatic Hernia.


Because we are the ones who will have to fund it.
Despite our medical bills, funeral bills, lost jobs and homes.


Us.


Because the world overlooks our kids every single day.


Because this is the researcher’s jobs – not their lives or their kids. And they can only work jobs that exist.


Because hospitals and universities are going to chase money.


Because our millions and millions in hospital bills are not going to research.


Because most corporations want to support the popular billion dollar charities that give them name recognition. Unless they have a personal connection to CDH. Anyone? (e-mail me)


So in all honesty, WE ARE THE ONLY ONES THESE KIDS HAVE!!!!!
And only 1% of CDH families give back to CDH.


Many donate and fundraise for more generalized organizations or hospitals but not to fight CDH on the grand scale.


1%.


And social media posts, tweets and shares will raise awareness but not stop CDH.


The other charities aren’t global – they are local, national or work with 1 hospital. And trust me, if all the charities in ACDHO could work together on this to fund this, we would. But we are all powered by parent efforts.


It disgusts me to say that only money will save these kids. But it’s true.


So say all the governments and researchers with their hands out to us.
And though we gave $180,000 to research initiatives last year, the fund is currently empty.


Do you know what happens to research projects without funding? Without the backing of the patient community?


They die.


So do our kids.


As much as I wish, hope, work and pray that some amazing person or foundation or company will see these kids and care…. that’s like buying lottery tickets instead of getting a job.


This is on us.


US.


We need $2,000,000.


CDHi can barely pay for care packages for the babies right now.
We have families asking us for money all the time too. Literally daily sometimes.


We have helped over 6500 CDH families in every way we can with every penny we have.


If you are a CDH parent and in a good place or have a few moments or have a great contact…. please help us to help these kids. We need you.


We need 100% of families helping us to get this work done.


Donate. Fundraise. Volunteer. Something. Anything but just sharing this post (but thanks for that too!).


Because more kids will die.


And if we don’t care enough to stop that, then no one else will. Because they aren’t.


US.


PS: Facebook added the donation button to this post and I was going to delete it because I know it’s annoying to see yet another post on FB asking for money and I don’t want you all to dismiss this post as just “the charity needs money”


It is bigger than that.


We can’t talk the talk and not walk the walk.


WE must help these kids. So please share AND donate.


US.

Sincerely,

Dawn M. Ireland, CDHi President

Leave a Reply

Your email address will not be published. Required fields are marked *

Follow @ Instagram