A note from CDH International President, Dawn Ireland:
CDH families, while you’re doing your video for the CDH Telethon, please do a video for the CDH Study Group too. Every Study Group conference, the hosting hospital chooses 3 or 4 patient parents to share their stories. They are usually local families of the hosting hospital so it’s a narrow representation for an international event.
The CDH Study Group NEEDS to hear more diverse stories from CDH families around the world!
They need to hear your experiences with care, the emotional and financial toll, the pressures to relocate, the competition for patients and how that makes you feel, your experiences with schools, insurances, and what they don’t see, and why OUR CHILDREN NEED A STANDARD OF CARE FOR CDH. They especially need to hear from you families outside of the US, Canada, UK, France, Australia, and other large, rich countries. They need to hear from our families in Africa, South America, Asia!! They need to hear from YOU what our children and your families really need!
They don’t need fluff videos to make everyone feel that everything is great and nothing needs to change. And they don’t need to hear how families feel about a specific hospital or doctor. They will not use that video. You will not be heard. Trust me, they don’t need families to promote them at this event, it’s 3 days of everyone sharing their own work on CDH.
They need to understand the patient and family WHOLE picture. What it’s really like. What you really need. What research you really want. CDHI attends the conferences, we do the best we can relaying the community needs. I speak up about this as often as I can, wherever I can. But nothing is louder than ALL of us speaking up.
They will only choose a few videos. My guess based on past years is that they will choose 3 survivors, 1 Non-survivor, and simple cases that were fixed and out so they stick to the schedule. That’s how conferences work.
- Submit a video for the CDH Study Group by clicking HERE (you must log into a Google acct to submit).
- Send the video to firstname.lastname@example.org to use on the 2022 CDH Telethon as well
- Finish the CDH Patient Registry questionnaire. E-mail Jason or learn more at CDHresearch.org
- Do this by March 31st
Lobby to be accurately represented as the extremely diverse, complicated, global CDH community that we are!!! Submit a video.
And send the video to us at CDHI too for the Telethon. We will play them ALL. I don’t care if the Telethon is a week long. Everyone will be heard.
If we want things to change, if we want all of our kids to matter…. we have to speak up! RESEARCH IS ABOUT THE PATIENTS!