Showing posts with label England. Show all posts
Showing posts with label England. 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

Thursday, March 14, 2013

MEET OUR VOLUNTEERS - Melanie Parsons

Melanie ParsonsMelanie 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

Thursday, March 7, 2013

UK Jump for CDH Awarenesson April 19th!



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


UK Jump for CHERUBS





Friday, February 22, 2013

MEET OUR VOLUNTEERS - Clair Maher

Clair MaherClair 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.

Monday, September 12, 2011

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/