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 - Melanie Parsons

Melanie Parsons Hi I’d like to introduce myself, I’m Melanie and I’m mummy to a cherub angel Jak. He was born on 25th July 2001 at St. Mary’s hospital Manchester. He spent his 6 months in the hospital. He lost his hard fight on 24th January 2002. I am also mummy to Ben who was born two years and two days after Jak. And after a worrying pregnancy ( i worried not the doctors), all was find with Ben. I am 40 years young and live in Tyldesley in Manchester. I work in a cafe which is called Little Jak's Pantry in memory of our son Jak. I love reading shopping and spending time with Ben and Paul (my partner). Ben loves his martial arts he is nearly a black belt. He also loves playing computer games and riding his bike. I hope along with Clair, I can support the CHERUBS family and do my best to raise awareness to CDH

UK Jump for CDH Awarenesson April 19th!

Join us for April 19th on raise Congenital Diaphragmatic Hernia Awareness!!!


UK Jump for CHERUBS

• On Facebook - https://www.facebook.com/events/477004332360496/
• Sponsor at http://www.firstgiving.com/fundraiser/ClairMaher/cdhawarenessday2013
• 50% of money raised will be donated to Manchester Children's Hospital for CDH Research
• Contact Clair or Melanie with any questions about this event at uk@cherubs-cdh.org

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

Mount Snowden Climb - June 30, 2012 in Gwynedd, Wales, UK

The very first CDH Mountain Climb Fundraiser in memory of Faith Emily Marshall-Elkins

Mount Snowden Climb - June 30, 2012 in Gwynedd, Wales, UK

http://www.firstgiving.com/fundraiser/laranorth/mountsnowdonclimb 

Mount Snowden is the highest mountain in Wales, at an altitude of 1,085 metres (3,560 ft) above sea level, and the highest point in the British Isles outside Scotland. It is located in Snowdonia National Park (Parc Cenedlaethol Eryri) in Gwynedd, and has been described as "probably the busiest mountain in Britain".[3] It is designated as a national nature reserve for its rare flora and fauna.

The Charley Stanfield-Maher Ball - October 29, 2011 in Manchester, England

The Charley Stanfield-Maher Ball in honor of Charley Stanfield-Maher

Saturday, October 29 at 7:00pm - October 30 at 1:00am
Denton Golf Club

Charley's Angels second annual Ball. Following on from the huge success of last years black tie ball we will be having a halloween themed ball this year. Tickets are being designed as we speak but we can take details of interest initially. We already have several of last years guests asking for tickets so don't leave it too late.

Come join us & help Raise plenty of Awareness of Congenital Diaphragmatic Hernia. 

CDH Horse Racing Night - October 15, 2011 in Aberdeen, England

CDH Horse Racing Night in memory of Alfie Warchol

https://www.facebook.com/event.php?eid=245923455430944


We are holding a fundrasing Horse Race night in aid of
CHERUBS - Congenital Diaphramatic hernia , Research , awareness and support , in memory of Alfie John Black

A CHARITY VERY CLOSE TO OUR HEARTS !
As you may know we lost our baby boy Alfie John to CDH in March and would like to raise money to help this great charity !

TICKETS COST £5
We have limited numbers so tickets wil be sold on first come first serve

We are holding an interactive Horse race night with plenty of audience participation using race mats and dice ! NO VIDEOS ! 

Will be a good night

There will be 6 sponoered races during the evening and horses for the final 7th race will be auctioned on the night . 

There will also be a raffle and food by Scrumdiddly Umptious .

Sponsored Races
The horses for these races are on sale for £5 when u buy your ticket the wining horse from each race will win a bottle of spirits kindly donated by the sponsors !
There are only 36 horses for sale so hurry !
There will also be betting on the night !

Auctioned race
Horses for the final race will be auctioned on the night befor the final race .
The winning owner will receive 50% of the total auction prices for all the 6 horses in the last race .

IF YOU WOULD LIKE TO PURCHASE TICKETS ,BUY A HORSE OR DONATE A RAFFLE PRIZE OR HAVE ANY FURTHER QUERIES PLEASE CONTACT
DONNA - 07754111264

If you would like to find out more about CHERUBS feel free to visit there web site www.cdhsupport.org/

CHERUBS 2009 Congenital Diaphragmatic Hernia Conference Lectures

It took a while, but our 2009 CDH Conference Lecture videos are finally up!

CHERUBS 2009 International Member Conference

San Antonio, TX

July 23-25, 2009

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:

Conference 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
Chad Knudsen
Charles Hess – in honor of Adam Hess
Chris Arango
Chris Meats - in honor of Ian Meats
Craig Williamson – in memory of Shane Torrence
Dave Holt - in honor of Braden Holt
Dave Lipsit
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
Primerica
Tara Hall - in honor of Brandon Hall
The Jammies

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.

2009 CHERUBS Conference Lectures


The quality isn't exactly professional but we try hard to bring you as much information as possible through video!  



Kevin Lally, MD
(International CDH Study Group)
The History and Future of CDH

Part 1 - http://www.youtube.com/watch?v=E0OBJPRBUPo  view the rest of the videos at http://www.cherubsconference.org/2009.php Meaghann Russell, MPH and Mauro Longoni, MD (MassGeneral CDH Clinic, Boston, MA) CDH and Genetics Part 1 - http://www.youtube.com/watch?v=QhKc0K-pNO0  view the rest of the videos at http://www.cherubsconference.org/2009.php Daryl Scott, MD and David Pearson (Baylor Genetic CDH Study Program) CDH and Genetics   Click here to download slide show