Showing posts with label United Kingdom. Show all posts
Showing posts with label United Kingdom. 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

Thursday, May 9, 2013

2013 Congenital Diaphragmatic Hernia Awareness



Current states that have proclaimed April 19th a day to raise Congenital Diaphragmatic Hernia Awareness as of May 8th:

1. Alabama
2. Arizona
3. Arkansas
4. Connecticut
5. Colorado
6. Georgia
7. Hawaii
8. Idaho
9. Illinois
10. Indiana
11. Iowa
12. Kentucky
13. Louisiana
14. Maryland
15. Massachusetts
16. Minnesota
17. Montana
18. Nevada
19. New Mexico
20. New York
21. North Carolina
22. Ohio
23. Oklahoma
24. Oregon
25. Pennsylvania
26. Rhode Island
27. South Carolina
28. South Dakota
29. Tennessee
30. Texas
31. Vermont
32. Virginia
33. Washington
34. Wyoming
35. Guam

Cities & Towns:

1. Chicago, IL
2. Raleigh, NC
3. Wake Forrest, NC
4. Everett, MA
5. Rowland, TX
6. Vero Beach, FL
7. Gainsville, FL
8. Providence, RI
9. Boston, MA
10. Peoria, IL
11. Huntsville, AL
12. Newbedford, MA
13. Saratoga Springs, UT
14. City of Salt Lake, UT
15. Nashville, TN
16. Wheeling, IL
17. Buffalo Grove, IL
18. Pittsburg, PA
19. Baltimore, MD
20. Cleveland, OH
21. Fortworth, TX
22. Boonsville, MS
23. Jumpertown, MS
24. North Wilksboro, NC
25. Manahawkin, NJ
26. Portsmouth VA
27. Fresno, CA
28. Mebane, NC
29. Lakeville, MN
30. Colorado Springs, CO
31. Morrisville, NC
32. North Richland Hills, TX
33. Hickory Hills, IL
34. Mesa, AZ
35. Tinley Park, IL
36. Tonganoxie, KS
37. Orland Park, IL
38. Dallas, TX
39. Aurora, IL
40. Baltimore, MD
41. Prattville, AL
42. Siloam Springs, AR
43. Selma, AL
44. Crest Hill, IL
45. Cedar Hill, TX


Senator Jeff Sessions introduced Senate Resolution 85 to proclaim April 2013 "National Congenital Diaphragmatic Hernia Awareness Month", co-sponsored by Sen. Ben Cardin.  It was passed unanimously in the United States Senate on March 20, 2013.

On April 9, 2013 Rep. Martha Roby (R-AL)  introduced H. Res. 114 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH.  5more Representatives have since joined as Co-Sponsors:

Please ask your Congressmen to support the companion Resolution H Res 114 in the United States House of Representatives.

Go here to track the progress of the House Resolution -
http://www.govtrack.us/congress/bills/113/hres144#

Download H Res 114 -
http://www.govtrack.us/congress/bills/113/hres144/text

Senate Res. 85 - http://www.govtrack.us/congress/bills/113/sres85

Look Up Your Congressmen to find his / her mailing address - http://www.house.gov/writerep/






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

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, February 11, 2013

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:


More April 19th CDH Awareness Events:

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!
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Copyright © 2013 CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Suppot, All rights reserved.
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Monday, October 22, 2012

Member Quotes - Gemma Van Rillaer

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"I found Cherubs one week after Eilidh received her diagnosis and rely on this charity for support and advice. All families support and love each other with a family love" - Gemma Van Rillaer, mother to Eilidh

http://www.cherubs-cdh.org/