Showing posts with label Europe. Show all posts
Showing posts with label Europe. Show all posts

Thursday, August 29, 2013

Join Us on the Very First Planned European CDH Conference for Families!


First Ever Annual International European Congenital Diaphragmatic Hernia Conference for Families!
 
Dublin, Ireland
Questions or information?  Contact our UK CHERUBS Representatives Clair Maher, Melanie Parsons and Zoe Burcell at uk@cherubs-cdh.org

CDH FAMILY CONFERENCE

For over 10 years CHERUBS has held CDH Conferences, with our set up as:

Day 1 - Pizza Party/ Dinner

• Family Introductions
• Parade of Cherubs 

Day 2 - Research Day

• Medical Speakers
• Medical Q&A Panel
• Free Genetic Testing
• CDH Lab & Clinic Tours 

Day 3 - Awareness Day

• CDH Research Bill
• April 19th
• Volunteering
• Fundraisers 

Day 4 -  Support Day

• Round Table Discussions
• Kids CDH Song Performance
• Family Conference Conclusion
Posting to give families a bit of history of what our conferences have been like for the last 10 years so you have somewhat of an idea what to expect at not just our conference, but all CDH conferences now (we love teaching others!).   BUT how we set up our Dublin conference will be NEW and not public knowledge until closer to the date.   We like being ORIGINAL and creative and are very excited to work with MANY other charities in ACDHO in the first truly European CDH Conference!  Stay tuned!  :)
 

Hotel Information can be found at http://www.thomaspriorhall.com/hotel
Limited number of Rooms available at a discounted rate of:
  • Double Room B&B (2 Adults)  €99 Per Room Per Night
  • Triple Room B&B (2 Adults and 1 Child)  €104 Per Room Per Night
  • Family Room B&B (2 Adults & 2 Children) €109 Per Room Per Night


Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS and participating ACDHO charities to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

• 3 half-days so you have time to see local attractions
• Pizza party and parade of cherubs
• World renown guest speakers
• Great round-table discussions for families of survivors and angels
• Participate in CDH Research
• Meet other CDH families
• Kids are always welcome!
• Special needs families often qualify for grants to attend (check with your social worker)
• Our conference makes a wonderful family vacation


 




CDH Family Conference:

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

* 3 half-days so you have time to see local attractions
* Pizza party and parade of cherubs
* World reknown guest speakers
* Great round-table discussions for families of survivors and angels
* Participate in CDH Research
* Meet other CDH families
* Hotel rooms are always affordable for the area
* Kids are always welcome!
* Special needs families often qualify for grants to attend (check with your social worker)
* Our conference make a wonderful family vacation!!!!


CHERUBS MEDICAL ADVISORY BOARD

• Patricia Donahue, MD – Massachusetts General Hospital
• David Kays, MD – University of Florida at Gainesville
• Henry Rice, MD – Duke University Medical Center
• Edmund Yang, MD – Fetal Treatment Center of St. Louis
• N. Scott Adzick, MD – Children’s Hospital of Philadelphia
• Kevin Lally, MD, MS - University of Texas Medical School at Houston, CDH Study Group
• Wendy Chung, MD - Columbia Presbyterian, DHREAMS
• Doug Miniati, MD - University of California San Francisco
• Jan Deprest, MD, PhD - University Hospital Gasthuisberg, Leuven, Belgium
• Paul Losty, MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) – Liverpool University, UK
• Steadman McPeters, NP - Pediatric Surgery Nurse Practioner, Huntsville

PAST CHERUBS CONFERENCE PRESENTERS

The following have presented at CDH Family Conferences in past years:

• Jay Wilson, MD - Boston Children's Hospital, Harvard University
• Patricia Donahoe, Massachusetts General Hospital
• Michael R. Harrison, MD - University of California at San Francisco Fetal Treatment Center
• David Kays, MD - University of Florida at Gainesville / SHANDS
• Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program
• Marc Arkovitz, MD and Julia Wynn - New York Presbyterian Columbia / DHREAMS
• Bella Belleza-Bascon, RN, MHA - Texas Children's Hospital / Fetal Center, Baylor College of
Medicine
• Kevin Lally, MD - CDH Study Group
• Daryl Scott, MD and David Pearson - Baylor Genetic CDH Study Program
• Dr. Edmund Yang, St. Louis Fetal Care Institute
• Ruben Quintero, MD - Fetal Treatment Program
• Priscilla Chiu, MD - Sick Children's, Toronto, Canada
• Brenda Slavin, RN - Children's National Medical Center, Washington DC

Sunday, June 9, 2013

Announcing 2014 International European CDH Conference for Families in the United Kingdom


First Ever Annual International European Congenital Diaphragmatic Hernia Conference for Families!
 
Dublin, Ireland

 

All members in good standing from ANY country are welcome to attend!
Questions or information?  Contact our UK CHERUBS Representatives Clair Maher and Melanie Parsons at uk@cherubs-cdh.org


CDH FAMILY CONFERENCE

Thursday, July 31st - Pizza Party/ Dinner

• Family Introductions
• Parade of Cherubs 

Friday, August 1st - Research Day

• Medical Speakers
• Medical Q&A Panel
• Free Genetic Testing
• CDH Lab & Clinic Tours 

Saturday, August 2nd -Awareness Day

• CDH Research Bill
• April 19th
• Volunteering
• Fundraisers 

Sunday, August 3rd Support Day

• Round Table Discussions
• Kids CDH Song Performance
• Family Conference Conclusion

 


Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

• 3 half-days so you have time to see local attractions
• Pizza party and parade of cherubs
• World renown guest speakers
• Great round-table discussions for families of survivors and angels
• Participate in CDH Research
• Meet other CDH families
• Kids are always welcome!
• Special needs families often qualify for grants to attend (check with your social worker)
• Our conference makes a wonderful family vacation


About The CDH Family Conference:

• Expect to learn a lot about Congenital Diaphragmatic Hernia!
• Our guestspeakers are always the best in their fields, bringing us new information every year!
• ALL CDH families are welcome to attend!  This includes families of survivors, grieving families and expectant families.
• Our conferences include family introductions, round-table discussions, research guest lectures, Q&A sessions and much more!
• Each conference runs for 3 half-days; CDH Research Day, CDH Awareness Day and CDH
Support Day.
• CHERUBS conferences are planned to be educational, supportive and affordable!
• Our conference hotels always offer rooms around $100 per night, breakfasts and parking.
• Meet new friends, see old friends and participate in research for various hospitals.
• Our conferences are always half days so that families can enjoy local tourist attractions.
• Children are welcome and babysitting services will be provided during conference hours.
• Our conferences are held near top rated hospitals for safety.
• We take photos, we videotape intros and lectures but we ALWAYS respect member confidentiality and privacy!
• Join in our new Parade of Cherubs at every conference!
• Join in our balloon releases at every conference!
• We have a pizza party on the first night of every conference.
• Kid's get a chance to learn the CDH kids song and perform on the last day of the conference.
• CHERUBS does not charge a conference fee.
• For safety and privacy of our members, you MUST be a member of CHERUBS to attend.  You
may register for free at http://www.cherubs-cdh.org/members
• Many families of survivors are eligible for grants to cover travel expenses to medical
conferences.  Ask your child's social worker for more information.
 




CDH Family Conference:

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhboards.org

 * 3 half-days so you have time to see local attractions
* Pizza party and parade of cherubs
* World reknown guest speakers
* Great round-table discussions for families of survivors and angels
* Participate in CDH Research
* Meet other CDH families
* Hotel rooms are always affordable for the area
* Kids are always welcome!
* Special needs families often qualify for grants to attend (check with your social worker)
* Our conference make a wonderful family vacation!!!!


CHERUBS MEDICAL ADVISORY BOARD

• Patricia Donahue, MD – Massachusetts General Hospital
• David Kays, MD – University of Florida at Gainesville
• Henry Rice, MD – Duke University Medical Center
• Edmund Yang, MD – Fetal Treatment Center of St. Louis
• N. Scott Adzick, MD – Children’s Hospital of Philadelphia
• Kevin Lally, MD, MS - University of Texas Medical School at Houston, CDH Study Group
• Wendy Chung, MD - Columbia Presbyterian, DHREAMS
• Doug Miniati, MD - University of California San Francisco
• Jan Deprest, MD, PhD - University Hospital Gasthuisberg, Leuven, Belgium
• Paul Losty, MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) – Liverpool University, UK
• Steadman McPeters, NP - Pediatric Surgery Nurse Practioner, Huntsville

PAST CHERUBS CONFERENCE PRESENTERS

The following have presented at CDH Family Conferences in past years:

• Jay Wilson, MD - Boston Children's Hospital, Harvard University
• Patricia Donahoe, Massachusetts General Hospital
• Michael R. Harrison, MD - University of California at San Francisco Fetal Treatment Center
• David Kays, MD - University of Florida at Gainesville / SHANDS
• Meaghan Russell, MPH and Mauro Longoni - Mass General Genetic CDH Study Program
• Marc Arkovitz, MD and Julia Wynn - New York Presbyterian Columbia / DHREAMS
• Bella Belleza-Bascon, RN, MHA - Texas Children's Hospital / Fetal Center, Baylor College of
Medicine
• Kevin Lally, MD - CDH Study Group
• Daryl Scott, MD and David Pearson - Baylor Genetic CDH Study Program
• Dr. Edmund Yang, St. Louis Fetal Care Institute
• Ruben Quintero, MD - Fetal Treatment Program
• Priscilla Chiu, MD - Sick Children's, Toronto, Canada
• Brenda Slavin, RN - Children's National Medical Center, Washington DC

Sunday, June 2, 2013

President Dawn Torrence Williamson, Represents CHERUBS at International CDH Workshop in Rotterdam




This week CHERUBS President and Founder, Dawn Torrence Williamson, will be speaking to CDH surgeons and researchers at the International CDH Workshop at Sophia Children's Hospital in Rotterdam, Holland.   An event to showcase the latest in Congenital Diaphragmatic Hernia Research and results from the CDH Study Group, this is a wonderful opportunity for the world's largest CDH charity to share our information and services and to learn how we can better work with researchers worldwide.

Research being presented this year includes:


Kevin Lally, Houston, USA      
The CDH registry, 8000 patients included: so what?

Jay Wilson, Boston, USA
CDH; my personal “toy”; why I still do not understand CDH

Annelies de Klein, Rotterdam, the Netherlands
Human molecular genetics; to whose benefit?

Zornita Stark:  Chromosome abnormalities detected by SNP  microarray in a cohort of 28 infants with congenital diaphragmatic hernia

Paul Brady: Exome sequencing identifies inherited pathogenic variants for congenital diaphragmatic hernia

Artem Burov: Family bilateral congenital diaphragmatic hernia

Daryl Scott, Houston, USA
Genetic modulated animal models; does it bring anything relevant?

Richard Keijzer, Winnipeg, Canada
The Nitrofen rat model of CDH; still applied toxicology?

Robbert Rottier, Rotterdam, the Netherlands
Pulmonary vascular development: maximal confusion?

Heleen Kool: Pericytes play a central role in pulmonary hypertension and the origin of CDH

Rory Morty: Giessen, Germany
The extra-cellular matrix; a different organ?

Kim Schilders: An in vivo approach to determine the dynamic Sox2 interactome of the developing lung

Joshua Ochieng: Ectopic Sox2 expression reprograms mature airway epithelial cells

Martin Post, Toronto, Canada
Of mice and men: relevant for injury and repair?

Patricia Pereira Terra: MicroRNA miR-200b rescues abnormal branching morphogenesis of nitrofen-induced hypoplastic lung explants

Albert Sgrò: Role of the autoptic examination in CDH

Jan Deprest, Leuven, Belgium
PLUG the lung: is it ethical justifiable?

Jamila Al-Maary: Fetal tracheal occlusion for pulmonary hypoplasia in severe congenital diaphragmatic hernia: A systematic review and meta-analysis of survival outcome

Claudia Hagelstein: Repetitive MR Measurements of Lung Volume in Fetuses with Congenital Diaphragmatic Hernia: Individual Development of Pulmonary Hypoplasia during Pregnancy with Calculation of Weekly Lung Growth Rates

Noriaki Usui: Relationship between the L/T ration and the O/E LHR in fetuses with congenital diaphragmatic hernia

Philip DeKoninck: The use of speckle tracking in cardiac function assessment in fetuses with congenital diaphragmatic hernia

Inga Sandaite: Relationship between herniated liver-to-thorax ratio and lung volumes measured

Alexandra Benachi: Liver position in left-sides congenitaldiaphragmatic hernia

Philip De Koninck: Cardiac assessment in fetuses with right-sided congenital diaphragmatic hernia: a case-controlled study

Patricia Terra: MicroRNA miR-200b expression changes during FETO in CDH – a pilot study

Anouk Deden: Exploring the use of nanoparticles to deliver microRNAs for prenatal therapies

Irwin Reiss, Rotterdam, the Netherlands
Respiratory management: the VICI trial; the wrong choice?

Paola Giliberti: Effects of different ventilation modalities on near infrared spectroscopy in operated CDH infants

Francesca Londolfo: Effects on functional residual capacity (FRC) and lung clearance index (LCI) of surgical repair and pleural effusion in high risk left congenital diaphragmatic hernia (CDH)

Osamu Kimura: The way to shorten the postoperative intubation period in neonates with congenital diaphragmatic hernia

Ulrike Kraemer, Rotterdam, the Netherlands
Pulmonary hypertension: a classical example of lack of knowledge!

Rose Gaiteiro: Prostaglandin E1 use in congenital diaphragmatic hernia (CDH); A 13 year review of outcomes (2000-2012) in a single tertiary paediatric academic health science centre

8.42 – 8.54 am    Neil Patel:  Right ventricular diastolic function measured by tissue Doppler imaging predicts outcome in congenital diaphragmatic hernia

Neil Patel: Benefits of the intravenous phosphodiesterase inhibitors sildenafil and milrinone in infants with congenital diaphragmatic hernia

Tomohiko Tanaka: Evaluation of diastolic disorder using diastolic wall drain (DWS) before and after radical surgery for congenital diaphragmatic hernia

Ryo Ishii: The impact of intravenous administration of prostacyclin for congenital diaphragmatic hernia

Tadahura Okazaki, Tokyo, Japan’
Clinical strategies: all wisdom comes from the East?!

Irma Capolupo: SNAP-II score correlates with the outcome of infants with congenital diaphragmatic hernia; a single center, prospective study

Mary Brindle: CDH mortality score: a validated clinical prediction rule to stratify patients with congenital diaphragmatic heria (CDH) based on their risk of mortality

Artem Burov: Intensive care of newborns with congenital diaphragmatic hernia in the perinatal center; Russian experience

Kouji Nagata: The current profile and the future perspectives of congenital diaphragmatic hernia – A nationwide survey in Japan

Thomas Schaible, Mannheim, Germany
ECMO: an expensive way to die?

Pietro Bagolan, Rome, Italy
Surgical approaches: an art without evidence?

Paul Losty: A nationwide survey of prosthetic patch utilisation in
newborns with congenital diaphragmatic hernia

Karin Zahn: Single centre results and patients selection criteria for thoracoscopic repair of congenital diaphragmatic hernia in neonates

Tadahura Okazaki: Thoracoscopic repair for congenital diaphragmatic hernia in neonates: a single center study

Paolo De Coppi, London, UK
Tissue engineering; the future of repair?

Luca Urbani: Diaphragm remodeling is promoted by an acellular matrix in a muscle-specific spinal muscular atrophy mouse model

Hanneke IJsselstijn, Rotterdam, the Netherlands  
Structured follow up; does it help the individual patient?

Daphne Mous: Gentle ventilation in congenital diaphragmatic hernia patients: Long-term pulmonary outcome

Laura Valfre: Surgical outcomes in congenital diaphragmatic hernia survivors: Long term-follow up

Laura Valfre: Patching the diaphragm affects orthopaedic outcome: A five years follow-up

Paul Losty: Outcomes following prosthetic patch repair in newborns with congenital diaphragmatic hernia – A single centre experience

Neil Patel: Sildenafil weaning post-discharge in congenital diaphragmatic hernia

Marlous Madderom, Rotterdam, the Netherlands
Congenital diaphragmatic hernia with(out) ECMO: impaired development at 8 years, the disease or therapy to blame?!

Julia Gunn: Two year neurodevelopmental outcome following
neonatal repair of congenital diaphragmatic hernia
Karin Zahn: Long-term results of ECMO therapy in neonates with congenital diaphragmatic hernia

Kirsten Lyons: The effects of a sustained flexed position in supine on a CDH infant displaying reduced spontaneous movements against gravity: a case report

Monique van der Cammen: Motor performance in children with congenital diaphragmatic hernia treated with neonatal extracorporeal membrane oxygenation; a nationwide evaluation

Daphne Mous: Congenital diaphragmatic hernia patients treated with ECMO are at risk for chronic malnutrition into childhood

Beth Haliburton: Energy intake in infants with congenital diaphragmatic hernia (CDH)

Meike Weidner: MR quantitative pulmonary perfusion imaging at 3.0 T of 2-year-old children after congenital diaphragmatic hernia repair

Marjolein Spoel: 3He MRI in young adults with congenital diaphragmatic hernia: alveolar size differences between the IPSI- and contralateral lung

 


Also speaking is Onno Zwart, founder of En Stitching Hernia Diafragmatica, a Netherlands based CDH charity that was also founded in 1995.  Onno and his wife, Sigrid, have lost 3 cherubs to CDH and are long time members of CHERUBS.  In 2000, Onno visited the United States to attend CHERUBS first conference in Orlando (photo below), the first of many other CDH charity leaders we have welcomed to our events.  13 years later, Onno and Sigrid are hosting us for the CDH Workshop in Holland.

We are very grateful for this speaking opportunity and look forward to sharing information with CDH families, as well as our speech, when we return.


 CHERUBS 2000 CDH Conference

 Onno Zwart

  Onno and Dawn at Disney, 2000
(we will get better photo this year)

CDH Leaders in San Antonio, 2009