Sunday, May 31, 2009

CHERUBS and the American Pediatric Surgical Association

This week in Puerto Rico, 3 CHERUBS Board Members represented our organization and CDH families at the APSA convention.

We were able to talk to 100's of pediatric surgeons and start projects with several of them. We have an amazing project going on with the CDH Study Group, a group of about 90 CDH centers. We talked with doctors from every CDH center; we talked with many of the best CDH researchers in the world. We supplied data for families, ribbons for doctors (that were even worn during research speaches). Several surgeons even came up to us and thanked us for being there and for all we do for CDH families.... that touched our hearts so much to know they think we're doing a great service for their patients!!! We won't name all the doctors we talked to and we won't reveal our projects right now but we do want to thank the following for their invaluable information; Kevin and Pam Lally, Michael Harrison, David Kays, Priscilla Chui, Charles Stolar, Duncan Phillips, Bradley Rodgers and the doctors at UCSF, Boston Children's, Duke, CHOP, Cinncinnati Children's Hospital, the Canadian Pediatric Surgical Association and ACDHO.

The conference went incredibly, amazingly well. We learned A TON about so many different things and now have all the absolute latest research on CDH. We talked with many surgeons on ways to help families, create more CDH awareness and research together. It was an extremely exciting and productive meeting.

We even went snorkeling with a few of the surgeons and shared flights with some as well. Every opportunity educated us more and more about CDH and what all CDH research centers (including CHERUBS) has to offer.

On Saturday we also met in person with Pam Lally of the CDH Study Group and looked over each of our databases (confidentially of course) and spent a few hours discussing our research and findings for both organizations. We have big, big, BIG plans and are so incredibly proud and honored to working with the CDH Study Group and all 90 CDH Research Centers. It is CHERUBS objective to work with ALL CDH research centers and to accomplish as much as possible in the realm of CDH Research.

It took us 14 years to get here - but we did it. To do this research and have it make a difference. This is our 3rd attendance at an APSA conference - CHERUBS was the very first non-profit ever admitted into this event in 1995. In 2009, most of the surgeons knew exactly who CHERUBS is and what we stand for! We have come a long, long way since then!! We truly could not have had a more positive or productive conference or been made to feel more comfortable and welcomed and like part of the group.

I have to say thank you to Barb and Bren…. they both did an amazing, amazing job and I am so, so proud of them and so grateful to them. Our Board Members paid for our travel expenses out of our own personal pockets and conference costs were paid for by grants. Not a single penny from donations went to help send CHERUBS to this conference but 1000's of CDH families will benefit from all the amazing things are happening!

It's been an absolutely incredible week for CHERUBS and for all CDH families around the world!

Stay tuned for more details, more research news and more research data!

1 comment:

FaithCDH said...

Great job ladies! Thank you for all that you do!

The Miles Family