Monday, July 27, 2009
CHERUBS 2009 International Member Congenital Diaphragmatic Hernia Conference
Our 2009 International Member Conference for families affected by CDH was a wonderful success!
We had 17 families and 8 organizations represented from 4 countries. It was truly an international CDH conference. One person called it a "CDH Summit" but we hate to use the word "summit" as that is a meeting of peace of countries / organizations who can't get along - and we most definitely all get along! :) It was a "CDH Conference" - for and about Congenital Diaphragmatic Hernia. It included CDH Research, Awareness and Support.
It began on Wednesday with our Pizza Party and Introductions. We presented Danielle Kessner of CHERUBS Australia with a cherub statue. In 2000, CHERUBS members presented Dawn with a crystal statue. Now that CHERUBS Australia and CHERUBS UK have their own non-profit status and president, it is fitting that all 3 have the statue. Brenda Lane of CHERUBS UK received hers on Thursday as they missed the Pizza Party. Also at the Pizza Party, the new CDH song "I'll Never Let You Go" by The Jammies was unveiled. We will post that video in a few days.
Our hotel was just beautiful and Chris Arango of the San Antonio Holiday Inn Select was wonderful. There were a few issues but he fixed them ASAP. We were very impressed with them!
On Thursday, we were blessed with incredible guest speakers!!! Daryl Scott MD and David Pearson from Baylor's CDH Research Team were wonderful! Their presentation was very informative and the parents were able to ask lots of questions. We all learned quite a bit about genetics and CDH!
Then Dr. Kevin Lally presented from the CDH Study Group and we learned about the history of CDH, the future of CDH and all the research that the group is doing. And Pam Lally was so sweet to provide us with the latest (unpublished) survey tabulations. The parents were able to ask more questions about ECMO, CDH repair and survival rates. It was extremely informative.
On Friday, Drs. Meaghan Russell and Mauro Longoni from Boston Children's spoke on their CDH Research Study. We learned even more about CDH and genetics and how they use mice to create diaphragmatic hernias. The parents got to ask more genetic questions. They bought us copies of CDH News, their newsletter, as well and it featured a photo of last year's conference! :)
On Saturday and also on Friday we had round-table discussions and parents had the opportunity to talk to each other about their stories and various topics dealing with CDH. We all learned a lot from each other and we laughed, cried and shared so much. The doctors sat in on the discussions and learned from parents just as we learned from them. It was such a blessing to have the opportunity to do this.
And on Saturday, the kids learned a little song about CDH and performed it for us. Video to come soon!
Our conference ended each day at noon so that families could sightsee and socialize with other CDH families. Families went to the Alamo, Sea World, the River Walk, rodeos, shopping and more. Often, you would find families convening at the hotel swimming pool. The doctors fit right in and 2 of our Board Members had dinner with Meaghan and Mauro and had the opportunity to ask them lots of questions face-to-face. Videos will be posted soon!
This conference was also a milestone for CHERUBS - it was the first time the Presidents of all 3 CHERUBS have met in person. Dawn Williamson of CHERUBS (USA), Danielle Kessner of CHERUBS Australia and Brenda Lane of CHERUBS UK came together for the first time this year. We also welcomed Kim Richards of The Olivia Raine Foundation and Michelle Brown of Little Lambs. Not to mention doctors from 3 more CDH studies - Kevin and Pam Lally of the CDH Study Group, Meaghan Russell and Mauro Longoni of Mass General / Boston Children's CDH Study and Daryl Scott and David Pearson from Baylor College's CDH Study. All 8 organizations are members of ACDHO, The Alliance of Congenital Diaphragmatic Hernia Organizations - a group of CDH organizations and research centers dedicated to working together to help support, protect and advance the CDH community. 8 CDH organizations all together at once to help each other and CDH families!!!!
Talking to the other members of ACDHO and to the families we got such great advice on how else we can help the CDH community. It was wonderful to talk to the other organization leaders and get their opinions on so much and learn about services that they offer, rules they give their volunteers, how they deal with certain situations, etc. Listening to the families during the round-table discussions and listening to the questions that they asked the doctors, we learned what topics they really want to know more about and want to see us post more about. We learned so much that we will all bring forward to the CDH community!
We want to say thank you to our guest speakers and to Karen Myers, a member who went above and beyond to make this conference possible. We'd also like to thank Barbara Wagner, who showed what a CHERUBS volunteer is all about with all she's done to help us. And to our sponsors and volunteers:
A very, very special thank you goes to the following individuals:
Alec Myers – in memory of Kaleigh Myers
Barbara Wagner – in honor of Logan Wagner
Charles Hess – in honor of Adam Hess
Chris Meats - in honor of Ian Meats
Craig Williamson – in memory of Shane Torrence
Dave Holt - in honor of Braden Holt
Dawn Williamson – in memory of Shane Torrence
Fernanda Arce – in honor of Juan Pablo Arce
Jean Williamson – in memory of Shane Torrence
Jennifer Brown – in honor of Adrian Brown
Kara Hess – in honor of Adam Hess
Karla Holt – in honor of Braden Holt
Karen Myers - in memory of Kaleigh Myers
Kevin Lally, MD
Kimberly Richards – in memory of Olivia Raine Richards
Kimberly Switzer – in memory of Asher Switzer-McCoy
Lynne Brogdon – in honor of Baer Brogdon
Pam Lally, MD
Penny Campsey – in honor of Cole Campsey
Tara Hall - in honor of Brandon Hall
We would like the following for their generous donations:
Chuck and Kara Hess, in honor of Adam Hess
Jennifer Brown, in honor of Adrian Rivera
Karen Myers, in memory of Kaleigh Myers
Kevin and Barbara Wagner, in honor of Logan Wagner
Kimberly Richards, in memory of Olivia Raine Richards
Our conference concluded on Saturday, much to everyone's sadness. There were a few tears saying good-bye. We hope to all see each other again next year in San Francisco at our 2010 CDH Conference - along with lots of new families.
It truly was a wonderful week. Hopefully everyone left with more information on CDH, new friends and knowing that we are a big CDH family working together to help them and all those affected by Congenital Diaphragmatic Hernia.