What does CHERUBS do for CDH research? How can I help?

Posted on June 23, 2010

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Some people have asked how we fund research?

Well, to be honest we haven’t had $10,000 to donate to research because we just haven’t had that amount of donations. We would LOVE for members to donate to research – but we don’t believe in “funneling” donations and taking credit for your hard work and want families to donate directly to hospitals. That’s just honesty!

But while we haven’t had those funds, we are working hard to get them through grants and contests like the APX contest and our CDH Research Fund!!!!

And we doing LOTS of other things….

– We are working with Congress on trying to get $50 MILLION in funding for CDH research in NIH

– We are promoting Real Hope for CDH in the Chase giving contest for at least $20,000 to go to the research of Dr. Kays at Shands.

– We promote other charities in ACDHO like those who are raising funds for ECMO in the UK

– We promote events that raise money for hospitals. Go visit our event calendar and see what events you can help support!

– We have the world’s largest longterm CDH research database with over 3000 CDH patients.

– We are working on the CDH Research Site (link posted here) which will allow research stats on the fly! This will be FREE for all researchers and parents to use! Software and programming costs for this (we usually do it all ourselves but don’t have the programming experience for this) but it’s worth it because we can’t just sit on all this data and do nothing good with it!

– We have included CDH researchers in our conferences since the first one in 2000

– We have a medical advisory committee of the BEST of CDH researchers and have worked with many of them for over a decade!

– We attend medical conferences and learn about the newest CDH research and meet doctors from around the world and share our work

– We are currently working with a world reknown CDH research institute on a joint NIH grant to further genetic research.

– We have published our own research findings

– CHERUBS has been a guest speaker at the CDH Study Group

– We collaberate our data with the CDH Study Group

– We provide materials to all of our new and expectant CDH families about current genetic research, with 4 institutions sending us their materials to include in our CDH HOPE Totebags

– We run the CDH Research Medical Library on our site

– We have been posting and advocating for all CDH families to join in as many CDH studies as possible and have done this for 10 years! In fact, if you look most other groups and sites have copied directly from our site!

– We have MANY other projects going on, a few that will completely amaze you that have never been done before by any CDH parents or groups!!!! But we’re not ready to go public with those yet.

So what are we doing? We are doing so much on such little money!!!! CHERUBS has done more for CDH research and worked more closely with the research community than any other charity… we led the way!

So where will research money go? To get the research database off the ground and collaberate more with the CDH study group. To donate directly to the CDH study group, Mass General, DREAMS, Baylor, UCSF and many, many research facilities.

This is what we do and we will be doing a whole lot more!

View the 2000 CDH Research Study results at http://www.cdhsupport.org/cdhsurveyresults-2000.pdf

We now have over 3000 CDH patients in our database. Our new CDH Research Site will tabulate data on the fly!

HOW CAN YOU HELP?????

Promote ALL CDH organizations in contests! How can you not support anything that would help CDH families and research? 🙂

Vote for CHERUBS in the APX contest! Funds will go to CDH research and support! http://www.facebook.com/apxalarm?v=app_121215224555298&ref=ts (we are in the Eastern division!)
Click “LIKE” for APX Alarm>>Click “To start Voting”>>Click blue “Eastern” circle”>>Scroll down and find CHERUBS

Vote for Real Hope for CDH in the Chase contest! 100% of funds go to research! http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation?src=charity-details-wall-post-self&ref=mf

Make sure your membership form is accurate and up-to-date on our site and make sure you include your correct contact information. http://www.cdhforums.org/

Participate in any and all genetic studies that you can! ACDHO posts a list of all studies at http://www.acdho.org/

Encourage ACCURATE CDH research information on-line!!!!!!

Donate to the CDH research fund in honor / memory of your cherub! http://www.cdhdonations.org/

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Posted in: Medical