2010 CDH Summit Banner – Philadelphia, PN

Since 2010, Breath of Hope has hosted the Congenital Diaphragmatic Hernia Summit each year by coordinating with hospitals/medical centers.  We find reaching out to the hospitals and staff who take care of our very sick children we help facilitate collaboration with other hospitals and research studies.  We

hear their presentations of the latest research and information on congenital diaphragmatic hernia and come together to further efforts for research and awareness of this devastating birth defect.  We also get to meet some of the most amazing people.

Listed below are the summit presentations and hospitals we have coordinated.  We thank them all for their continued efforts, they are some of our many heroes on the front lines helping these children!

2010 CDH Summit in Philadelphia, Pennsylvania – Presentations:

  • Dr. Marcus Davey, Research Assistant Professor, Department of Surgery, University of Pennsylvania works directly with CHOP Fetal Diagnoses Center—his presentation is titled: Fetal Therapy for Severe CDH:  Can a Stitch in Time Save Nine?
  • Dr. Holly Hedrick, Pediatric Surgeon, ECMO co-director and Director of the Pulmonary Hyperplasia Program (PHP)
  • Martha G. Hudson, MSW. She follows CHOP mothers prenatally, into the NICU and is the SW for the PHP Program
  • Robin C. Cook, MS RD LDN, Pediatric Surgical/Trauma Dietitian who follows all CHOP CDH patients in PHP Program
  • Julia Wynn, MS—Dhreams—Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science (Columbia University)
  • Meaghan K. Russell, Clinical Coordinator, Identifying Genes Which Cause CDH, Massachusetts General Hospital, Boston, Massachusetts
  • William Skaggs III, M.S. Presentation on how CDH parents can cope with those who don’t “get” CDH

 

2011 CDH Summit in Saint Louis, Missouri – Presentations:

  • Katherine Q. Bernabe, MD, pediatric surgeon, St. Louis Children’s Hospital, assistant professor of surgery, Washington University School of Medicine
  • Meg Mohr, RN, MSN(R), Nurse Coordinator, Fetal Care Center
  • Mass General/Boston Children’s—Identifying Genes Which Cause Congenital Diaphragmatic Hernia Genetic Research Study (Since 2002) – Meaghan K Russell, Clinical Coordinator
  • Julia Wynn, PhD, Dhreams —Diaphragmatic Hernia Research & Exploration: Advancing Molecular Science (Columbia University)

 

2012 CDH Summit in Aurora, Denver – Presentations:

  • Dr. Jason Gien-CDH/PPHN Research Doctor for University of Colorado/Children’s Hospital Colorado
  • Susan Marshall, Dietician/Nutritionist from Children’s Hospital Colorado (CDH nutritional info followed by Q&A)
  • Katie Edic, Adult CDH survivor share her story
  • Dr. Crombleholme Fetal Surgeon
  • Dr. Jason Gien CDH Pediatrician specializing in following CDH children in clinic and long term effects/complications of CDH
  • Jennifer Merrill and Ashton Reppert, Social Workers at Children’s Hospital of Colorado
  • Dhreams Presentation (Columbia University) Julia Wynn
  • CDH Genetic Study—Boston Children’s/Mass General (longest running CDH genetic study in the United States) – Meaghan Russell, MPH (Mass General Hospital for Children) & Anna Frangulov (Boston Children’s Hospital)

We do not charge fees for anyone attending these CDH Summits and those who present do so on their time and expense.  We so appreciate the work they do and them taking the time to meet with us to discuss CDH and their experiences and findings in research.  The research studies who attend hire phlebotomists to come and draw blood for their studies and we do ask if you are attending to confirm this so we can be sure to have enough staff available for the research studies.  We also usually provide lunch and need accurate head-counts in order to order enough food.

We also obtain blocks of hotel rooms which are graciously given discounted rates and we do obtain discounted rates for the conference rooms we utilize for the summits.  We are always looking for sponsors to help cover these expenses.  Because our summits take place in major metropolitan areas, the hotels we utilize are not low end or inexpensive.

Each year we also have a Butterfly Release, which is an awesome sight to see and the children love it and adults become like children again watching these winged creatures take flight.  We always order our Butterflies from Fragrant Acres Butterfly Farm

Katie (CDH Survivor) and Family & her parents

4th Annual CDH Summit

The 4th Annual CDH Summit will be held in Cincinnati, Ohio from Wednesday, July 17th with presentations to begin on Thursday, July 18th and on Friday, July 19th.  We are coordinating with the 2nd Annual CDH Picnic on Saturday, July 20th, you can click on the following links to these events to join through Facebook.

4th Annual CDH Summit in Cincinnati, Ohio

2nd Annual CDH Picnic

Hotels rooms at a special rate of $75/night can be booked at the Hannaford Suites Hotel – let them know you are with the Breath of Hope CDH Summit.

If you are not a Facebook user, you can contact elizabeth@breathofhopeinc.com to sign up for the CDH Summit and you can contact Sheryl at sltrost@yahoo.com for more information on the CDH Picnic.

 

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