From CDH International President, Dawn Ireland:
Dear CDH Patients and Families:
May I be completely honest with you all?
April is coming so fast and we still have so much to do. So much to do! April is a very big month! We have the light ups, Telethon, Concert, 1000’s of graphics and videos to do and money to raise. 95% of our funding for the whole year happens in April and December. And it would be so nice to raise enough money to do a lot of really great things for the community.
We are looking for volunteers (Anyone want to help with graphics? Copy and paste work. Or blog posts? How about social media?) but that’s not what this post is about…..
We have this new registry… brand new, shiny registry that the CDH Study Group, DHREAMS, WOFAPS, ACDHO charities and others are working with on research with us.
There are 1000’s of patients in the registry already but no information has been requested (on Covid-19, new treatments, long-term complication, aging out of pediatrics, parental opinions on care, research and community work)
They want 1000 CDH Patients with **fully done questionnaires*** by March 31st.
So I am messaging CDH parents individually. One at a time. 1000’s of you. Because research is so so incredibly important. You can imagine how tedious and stressful that is. So we’re asking for your help….
What if the 1000’s of parents on Facebook fill out the questionnaire? That would be incredible for research, right? The problem is, with Facebook algorithms, only about 100 of you see our posts. On a good day.
But what if we fanned out like an army and not only did you (those who can see this), comment (to raise algorisms) but also filled out the questionnaires AND messaged ALL your CDH friends?
Like an old fashioned phone tree, we could be a CDH Research Army.
Would you do this for our kids?
They just have to join the charity at http://www.cdhboards.org and then Jason will get notified and send a research invitation.
If you or they are already members, they just need to e-mail Jason Miller at jason.miller@cdhi.org or Tracy Meats at tracy.meats@cdhi.org
That’s it.
This registry is our families’ best hope for finding out the cause, prevention and best treatments for CDH because we are working with all the surgeons and the labs. We are all working together with other charities in ACDHO.
More information is at https://cdhi.org/the-cdh-patient-registry-is-live-participate-in-research/
You can copy and paste this post and share it anywhere you want… on your wall, in groups. Please send directly in messages too. Reach out to other families, share how important this is. This is probably the biggest chance in our lifetimes that we can help these children. Let’s not let them down. Let’s not only hit that 1000 but go to 10,000! The more data the doctors have, the faster we have answers and hope!
And please don’t forget to fill out the registry questionnaire ASAP!
PS – there is a raffle going on for those who fill it out. $200 on February 28, $300 on March 31, $500 on April 30
