Thursday, May 20, 2010

2010 Congenital Diaphragmatic Hernia Conference

Our 2010 CDH Conference was a huge success!!!!!

The hotel was wonderful, the cherubs miracles and we learned so much from the researchers and each other.  The weather was great.  We truly could not have asked for a better week!!!

The kids were adorable dressed as cherubs for our Save the Cherubs campaign - we got some AMAZING photos, including photos at Disney, with Mickey and Minnie, at the pool and the first Parade of Cherubs and CDH balloon release.  And they sung the CDH Kids Song for us again this year!

We met so many wonderful families!  The pizza party, introductions and each day was wonderful.  CDH Research Day included slide shows, information and research participation.   CDH Support Day included many round-table discussions on every topic dealing with CDH.  CDH Awareness Day included everyone learning about easy and fun ways to raise awareness.  Everyone left the conference with new friends, lots of new information and excited to go home and start working to help other CDH families!  It was an absolute pleasure to meet so many wonderful parents and cherubs (and grandparents and other family members too!) that we talk to on-line all year round.  Good-byes were definitely hard this year!

This was our 10th anniversary of the first international Congenital Diaphragmatic Hernia Conference, also held in Orlando.   We are so proud of our conferences and guest speakers!  Put together by volunteers and medical professionals with CDH experience and built upon 15 years of working together to offer the most services and information and support for families at our conferences - while keeping them fun and affordable. They aren't just CHERUBS members getting together and hanging out, they aren't conferences about CHERUBS at all - they are truly 100% about Congenital Diaphragmatic Hernia!    They have included so many incredible doctors and researchers; 

Dr. Kevin and Pam Lally from the CDH Study Group
Michael Harrison, MD from UCSF (founding father of fetal surgury!)
David Kays, MD from SHANDS (founding father of gentle ventilation)
Jay Wilson, MD (founding father of the CDH clinic!)
Meaghan Russell and Mauro Longoni from Mass General CDH genetic study
Priscilla Chui, MD from Toronto Children's
Marc Arkovitz, MD and Julia Wynn, MS from DHREAMS
Bella Belleza-Bascon Texas Children's Hospital - Fetal Center, Baylor College of Medicine
Daryl Scott and David Pearson from Baylor College of Medicine

We've also had representatives from CHERUBS UK, CHERUBS Australia, the Olivia Raine Foundation, Little Lambs, Real Hope for CDH and other great ACDHO organizations attend our conferences!   Not to mention members from all across the U.S. as well as England, Ireland, Australia, Italy, Mexico and Canada!


Many families participated in CDH genetic studies by giving blood samples at the conference.  We were fortunate to have 5 researchers participate!  Not only did they speak on their research and share new information with us but they sat in on round-table discussions and learned from parents as well.   We will post more about the researchers and research and how you can participate in the next few days!  :)

CHERUBS also participated in 2 medical conferences and we have quite a bit of CDH research and projects going on that we will post about soon!  It was WONDERFUL to see the surgeons wearing our ribbon and buttons, to hear all the lectures on CDH, to talk to them about CDH and share our own information with them.  So many came up to us to thank us for our work, gather materials for their patients' families, to tell us they signed the petition against the trademark and were rooting for us, to ask us questions about how to deal with CDH families.    One conference even had a member wearing wings during their awards ceremony, escorting award winners to the podium.   This same conference had a speech about CDH and recognized CHERUBS and our work - we were even cited as their reference for a lot of their research information.   We even found a few sponsors along the way.   CHERUBS is the first charity to ever attend these events, we are so honored to be a part of both conferences!

It was a wonderful, productive, supportive and very beneficial week for the CDH Community!  More photos, details and videos coming soon!

We hope to see everyone next year!



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