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

MEET OUR VOLUNTEERS - Clair Maher

Clair Maher Hi I am Clair Maher, 39, and I live in Manchester England. My daughter Charley was born March 2010 with LCDH. During my pregnancy, Cherubs was my life line & becoming an International Rep is a huge honour. Charley was born at Manchester Children's Hospital where she had her CDH repair & large gortex patch at 5 days old. At 15 days old she had open heart surgery to repair coarctation of the aorta. March 2012, Charley had open heart surgery to remove the band placed on her Pulmonary Artery at birth. During this surgery Charley suffered an acquired Brain Injury which has put her back physically. She is currently NG tube fed awaiting a fundo & g tube. I work full time as a Manageress of a Jewellers. Married to Rodney, we have 3 boys. Niall is 16, a football scholar. Joshua is 8 and Samuel is Josh's identical twin who is our Heavenly baby. I enjoy socializing, DIY, true crime and fundraising . People who know me would describe me as being a genuine Friend.

UK Jump for CDH Awareness on April 19th

Join us to raise CDH Awareness on April 19th! April 19th UK Jump for CDH Awareness join us in raising CDH Awareness Sponsor at https://www.firstgiving.com/10125/cdhawarenessday2013 Contact Persons - Clair Maher and Melanie Parsons uk@cherubs-cdh.org   Facebook Event Page (more up to date details) - https://www.facebook.com/events/477004332360496/ When - Friday, April 19, 2013 from 11:00 am Where - The Parachute Centre, Tilstock, Whitchurch, Shropshire, UK   What - Parachute jump to raise CDH Awareness and Funds   Who Is Jumping - Clair Maher, Neeran Joynson, Michael Lang and Lyndsey Sheridan Who Can Participate - anyone who wants to raise CDH Awareness can wear a shirt or wings for the day at your school, work, etc.   Anyone can sponsor the event by donating.   50% of all local sponsorships and t-shirt sales and donations will go towards CDH Research at Royal Manchester Children's Hospital Official T-Shirts are highly encouraged for the event and also help raise much needed funds for CDH! Wings - you can borrow wings on April 19th if you make prior arrangements above (we have a very limited few) or purchase your own wings at http://www.cherubs-cdh.org/savethecherubs. Wings are also available at many party supply stores. Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness in our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!   Learn more about CDH and CHERUBS at http://www.cdhawarenessday.org. The Official 2013 Day of CDH Awareness T-Shirt is now on sale! 50% of local sponsorships and proceeds from the sales of t-shirts will go to CDH Research at Lurie Children's Hospital and 50% to CHERUBS. Order your 2013 CDH Day before March 31st to receive in time for April 19th events. Participate or Sponsor a Parade of Cherubs! https://www.firstgiving.com/10125/cdhawarenessday2013 T-shirt order and sponsorship deadline is March 31, 2013 Parade Participation free   Parade Participation + Adult T-Shirt        $20.00   Parade Participation + Child T-Shirt   $15.00   Blue Cloud Sponsorship $5,000.00   Pink Cloud Sponsorship $1,000.00   Yellow Cloud Sponsorship $500.00   White Cloud Sponsorship $100.00     Meet our United Kingdom International Representative, Clair Maher and Melanie Parsons.  You can reach them at uk@cherubs-cdh.org More April 19th CDH Awareness Parades: Washington DC New York City Dallas Chicago Philadelphia Seattle Phoenix Portland Denver Gainesville Peoria Salt Lake City Las Vegas Boston Virtual Parade of Cherubs More April 19th CDH Awareness Events: UK CDH Awareness Jump London Marathon Fundraiser CHERUBS Tattoo Fundraiser CDH Awareness Bows Hoosiers Pizza & Subs Fundraiser in honor of Jaxon Rogers Charlie's NC Fundraiser (May, 2013) View a more up-to-date list of events at www.cdhawarenessday.org Hold your own CDH Fundraiser or Event in honor/memory of your cherub with the CDH Fundraising Kit!  It includes 2 posters, balloons, brochures, donor info and instructions on how to hold many simple events! Talk to Melissa Larrison, our Fundraising Coordinator, to get started! Facebook Twitter Website Email Pinterest Google Plus Copyright © 2013 CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Suppot, All rights reserved. unsubscribe from this list    update subscription preferences

News Article - Scotland sets up ECMO expert group

http://thegovmonitor.com/world_news/britain/scotland-sets-up-ecmo-expert-group-6906.html

Scotland sets up ECMO expert group

Source: Scottish Government Posted on: 27th September 2009

Health Secretary Nicola Sturgeon today announced the establishment of an expert group to consider the medium to long term provision of adult ECMO treatment in Scotland.

Scotland already has provision of ECMO for children and heart surgery patients. This group will consider the need for ECMO for adults who may require longer term critical care for the purpose of respiratory support.

Scotland’s current arrangements allow patients to receive ECMO treatment where clinically necessary. Scotland’s specialists liaise with UK colleagues in this field and work with the commissioned UK co-ordinating centre in Leicester and with similar European centres.

Treatments such as ECMO require major resource and input from specialist nursing, medical and technical personnel (eg blood transfusion and laboratory services). It is important that any decision made on future provision is not to the detriment of other services such as cardiac surgery.

The key remit of the expert group is:

* To consider the findings of the recent CESAR trial and previously published evidence for the use of ECMO in adults.
* To take evidence from leading experts regarding the efficacy and safety of ECMO treatment in adults.
* Having considered this evidence, to provide recommendations to the Cabinet Secretary for Health and Wellbeing regarding current and future ECMO provision in Scotland.

The Group will be Chaired by Dr Simon Mackenzie, President of the Scottish Intensive Care Society. Dr Mackenzie will be joined on the Group by a number of leading clinicians in this field from across Scotland.

Ms Sturgeon said:

“It’s important that we have adequate provision of ECMO across the UK. Evidence gathered by the expert group will help us reach decisions about increasing ECMO capacity in Scotland.

“However, it will take time to establish dedicated Scottish provision. Therefore I and Health Ministers across the UK have asked the UK Critical Care Group to advise us on what action requires to be taken in the short term to increase UK capacity to deal with the flu pandemic flu.”

ECMO provision costs in the region of around £100,000 per patient episode.

ECMO is used to treat respiratory or cardiac failure that is considered to have a reversible cause and is unresponsive to conventional intensive care procedures. In essence, ECMO takes over part of the body’s function to enable the heart and lungs to recover and heal.

ECMO is similar to a heart-lung bypass machine. The patient’s circulation is connected to an external pump and an artificial lung (oxygenator). A catheter placed in the right side of the heart carries blood to a pump, then to a membrane oxygenator, where exchange of oxygen and carbon dioxide takes place. The blood then passes through the tubing back to either the venous or arterial circulation. An anticoagulant is used to prevent the blood clotting.

Adults may receive ECMO for a variety of reasons including post cardiac surgery and the conditions that may cause Adult Respiratory Distress Syndrome (ARDS) for example sepsis. Common causes for ECMO treatment in neonates and children include meconium aspiration, cardiac and respiratory causes, infection, and congenital diaphragmatic hernia.

ECMO is a highly specialised technique demanding even higher levels of medical, nursing and technical/laboratory support than in Level 3 (ICU) facility. An ECMO service has to have access to a large range of skills including trained intensive care medical and nursing staff with specific expertise in ECMO, perfusionists, respiratory specialists, operating theatre support, laboratory services, physiotherapists and other physicians and surgeons as well as numerous other services.

Topics: ECMO, goverance, health care, UK Critical Care