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

3 CDH Charities, 2 Contests!

It's a busy time on Facebook, there are now 3 CDH charities in 2 contests and all 3 need your help!   This is a quick, free way to help families affected by Congenital Diaphragmatic Hernia!

CHERUBS made it to Phase II in the APX Gives Back contest!!!!!

You can vote by going to http://www.facebook.com/apxalarm?ref=mf

Then click LIKE.
Next click the "Start nominating and voting".
Click on the blue logo for Eastern charities
Scroll down and find CHERUBS and endorse us! EVERY DAY!  Repost too please! :)

On Friday, we were in 1st place but now in Phase II the votes have been reset so we need to get all the votes we can!!!   We have a chance to win $100,000!!!!  All winnings from this contest will go to CDH Research and CDH Support!!!!!!!! 



Almost 2 weeks ago we told everyone to get ready for the Chase contest to vote for Real Hope for CDH, now the contest has started and we have 2 members of ACDHO in the Chase Community Giving contest!!!!

 Dr. Kays watching over one of his cherubs

Real Hope for CDH in the Chase contest!

http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation

Real Hope for CDH, affectionately known as "Kays Kids" is an ACDHO charity that helps fund the research of Dr. David Kays at the University of Florida in Gainesville / SHANDS.   Dr. Kays pioneered the "gentle ventilation" technique of ventilating CDH babies.  He is a wonderful doctor, a great man, a friend of CHERUBS for over 10 years and a saint to every family whose cherubs have been under his care.   All winnings from this contest will go directly to Congenital Diaphragmatic Hernia Research to learn how to better treat babies born with CDH.  To learn more about Real Hope for CDH, you can visit http://www.realhopeforcdh.com

The Olivia Raine Foundation (another ACDHO organization!) is also in the Chase Contest! 

Olivia Raine Richards

http://apps.facebook.com/chasecommunitygiving/charities/261968725-olivia-raine-foundation

The Olivia Raine Foundation is named in memory of cherub, Olivia Raine Richards.   Her family started this foundation in Michigan to help grieving parents pay for their childrens' funerals.   They are very low on funding right now and can use all the help they can get!   Please vote for them in the contest!  For more info or to make a donation, go to http://oliviaraine.org/

That's not all!!!!

Vote for Terry Guinn in Oprah's "Your Own Show" Contest!

Through the APX contest we had a chance to meet some of the wonderful other families voting for their charities.  We met Terry Guinn from the Prader-Willi Syndrome Foundation; ironically, our biggest "competition" in the contest - though there are no losers in this competition as we're all raising tons of awareness!  Terry's daughter was born with PWSF and as a special needs dad, he understand what families of medically fragile children go through.   Terry is a great guy and he raises TONS of awareness for his cause and now he wants to raise awareness of all special needs causes.  He's in Oprah's contest to be a host of a new talk show!  Read below:

http://myown.oprah.com/audition/index.html?request=video_details&response_id=2689&promo_id=1

Terry Guinn has entered a video audition into a contest to get his OWN show, but he needs your help to make this a reality. Please vote for Terry Guinn... http://bit.ly/terrysshow After you view the video, please vote using the voting button below the video and share with your friends to help Terry Guinn bring this special show, that will help create awareness for the many, many special needs of our special needs children. The Talk Show “Special Inspirations” will have as guests, parents and professionals to bring light to the many syndromes, diseases and growing numbers of disabilities that our children are facing. We will discuss struggles, solutions , treatments, diet, environmental factors, ect. Everything to raise awareness and create opportunities for research that can benefit everyone.

And should Terry win, one of his topics will be Congenital Diaphragmatic Hernia!!!!!   

So please vote for all 4 contest participants!   

You can also help by reposting this on your blog, web page, twitter or Facebook!    Every single vote helps to raise awareness of Congenital Diaphragmatic Hernia and hopefully by winning these contests we can raise some much needed CDH research and supports funds as well!!!!

What is CHERUBS?

"What is CHERUBS, what do they actually do for CDH families?".

CHERUBS is a 501(c)III non-profit organization founded in 1995 with 1 mission - to help ALL families affected by Congenital Diaphragmatic Hernia.  Our charity is named for ALL babies affected by CDH, to help all researchers at all hospitals and we offer MANY services.... we are a GROUP, a big family created to help others.  We are an original group of parents who formed a charity through grassroot efforts with the most positive of intentions - so that no family ever has to face CDH alone.  All of our services have led the way and inspired other groups and charities.... helping even more families!

And since 1995 we have helped over 3000 families!  We are the world's first and largest CDH charity and the most active.  We are a global organization with over 3300 members in 38 countries including over 150 medical professionals who are the absolute best in the field!

We do more than raise abstract money for CDH Research - we promote it, we conduct it, we encourage it... we participate in it!!!   We have a Medical Advisory Committee and we have attended medical conferences for 15 years, working with the world's best CDH experts.  We hold the world's largest long-term CDH research database and work with other researchers to search for the cause, prevention and best treatments of CDH.  And we are working hard towards raising $50,000,000 (yes, that's 50 MILLION!) in CDH Research Funds through the CDH Research Bill, which already has 3 sponsors! :)

We have promoted CDH Awareness DAILY for 15 years.  We created the first web site, posted the first information, the first blog, the first graphics, the first awareness shop, bracelet, t-shirt, button, etc... years before there was anyone else on the internet working to help CDH families.  We proclaimed the cherub as the international symbol for Congenital Diaphragmatic Hernia, voted with other CDH groups to design the official CDH Awareness Ribbon, are raising awareness across the country with the new Save the Cherubs campaign and the world's first CDH Awareness Bulletin Board.  And we led the way in the fight against the organization who trademarked "Congenital Diaphragmatic Hernia Awareness" and we won (without a spending a dime of donation money) and though it certainly hasn't been easy, we put our foot down against those groups pulling the CDH community down in drama and mud so that we can all focus on the families and babies.  We have 2 CDH songs, countless videos, calendars, an entire shop, 1000's of items on sale that we make only pennies off of to keep the cost low, several events, celebrity spokespeople and even more projects that we haven't gone public with!  :)

We are founding members of the Alliance of Congential Diaphragmatic Hernia Organizations.  We work with and promote all other organizations who share our principals and desire to help CDH families in a professional, safe and supportive environment. We never compete with other CDH groups, we never coopt their ideas, fundraisers or projects or inhibit their work in any way and we stand up to those who do - we treat other charities, families and researchers with respect and work towards a common goal of helping these babies, as any CDH charity should.  We helped CHERUBS UK and CHERUBS Australia to form... giving them our financial info, guidance and countless hours of support and encouragement and even our name - because it's so important to have as much support for families as possible!  We are so proud to have been able to do that and we are even helping a new Canadian group as well. Take a look at http://www.acdho.org - we are in great company and will promote any of the work and projects of any of these good people!  Last year, we had 8 CDH organizations our at our 2009 CDH conference.  This year we are promoting Real Hope for CDH in the Chase contest... a charity that will donate every single penny raised to the research at Shands hospital to help Dr. Kays with more research on ventilating CDH babies.  Dr. Kays has worked with CHERUBS for 10 years, the members of that charity have attended our events... we know where that money is going and we know the good work that they do and we are proud to support them!  ALL CDH families and charities should support that!  :)

We created the first CDH support group in 1993 with a few moms trying to survive the PICU at Duke and all the havoc and pain that CDH was throwing at us.  In 1995 we made it legal with non-profit status so that we could expand to help others.  We have supported, informed, and educated 1000's of families about CDH over the years.  We created the first CDH Parent Reference Guide, the first lists of Commonly Used Medical Terms and New Member Packets 10 years ago.  The first totebags, 2 books with over 450 stories of CDH families, calendars and videos, blogs for families, forums, the first listservs back in 1997, on-call parents, State & International Representatives, newsletters, brochures and so much more.  We have Adopt A Hospital kits to help make sure that hospitals have accurate and timely information for CDH families at the time of diagnosis.  We send books to PICU's and NICU's through this project as well.  We have sent out over 200 CDH HOPE Totebags to CDH families in less than a year thanks to the donations of our amazing members who have pulled together to help other families affected by CDH.  We hold CDH conferences that are created around the families... not us or our organization.  Our volunteers have taken calls in the middle of the night, gone to funerals, held hands in NICU's and PICU's, sent cards on birthdays and angelversaries.  We have established funds to help families with travel expenses and college tuition.  We have forums for expecting CDH babies, grief, survivors... even for each state and country and specialized forums for Adult Survivors, Grandparents, Dads, Kids, having babies after CDH and so much more - almost 60,000 posts of support, information and friendship.  We are there 24/7 on the forums, a safe and confidential place to talk, cry and just be with others who truly understand.  We cheer each other on during happy milestones, and we cry together during losses.  We are there for the diagnosis, birth, surgeries, feeding issues, IEP meeting and the losses too..... through it ALL.  We don't just help families in the initial months - we have experience and understand it all; the long term care, the therapies, reherniations, etc.  Not because we read about it somewhere or someone else told us about it... but because we lived it and that gives us more than just experience and knowledge but compassion as well.   

That's what has kept us here for 15 years.  We don't just talk the talk in promoting awareness, research and support... we walk the walk!   We live and breathe Congenital Diaphragmatic Hernia Awareness, Reseaerch and Support each and every single day. :)

We don't just offer 1 or 2 services or projects and then dozens of fundraisers.  We offer dozens of services and hold a few fundraisers to fund those services.  Our services always have been FREE to CDH families!  :)


CDH HOPE Totebag Project - http://www.cdhhope.org

CDH Research Congressional Bill - http://www.cdhbills.org

Adopt A CDH Hospital Campaign - http://www.cdhhospitals.org

Save the Cherubs Campaign - http://www.savethecherubs.org

International CDH Conference - http://www.cdhconference.org

CDH Forums - http://www.cdhforums.org

CDH Research Database - http://www.cdhresearch.org

CDH Newsletters - http://www.cdhnewsletter.org

CDH Baby Book - http://www.cdhsupport.org/babybook.php

CDH AWareness Items - http://www.cdhawarenesshop.org

CDH Awareness Ribbons - http://www.cdhawarenessribbon.org

Info for Expectant Parents - http://www.cdhsupport.org/expectant.php

Info for Survivors - http://www.cdhsupport.org/expectant.php

Info for Expectant Parents - http://www.cdhsupport.org/expectant.php

CDH Fundraisers - http://www.cdhfundraisers.org

CDH Calendar - http://www.cdhcalendar.org

CDH Research Fund, Awareness Fund, Family Assistance Fund, Support Fund and Scholarship Fund - http://www.cdhdonations.org

Angel Ball - http://www.cherubsangelball.org

CDH Videos - http://www.youtube.com/user/cdhsupport

Member Photo Albums - http://cdhsupport.org/members/album_personal_index.php

Member Blogs - http://cdhsupport.org/members/weblogs.php

Blog Ring - http://www.ringsworld.com/cdhblogsring/home.html#2

CDH Awareness Ticker - http://cdhsupport.blogspot.com/2009/04/over-half-million-babies-born-with.html

CDH News - http://www.cdhnews.org


These are just a few of our services.  You can see all that we do at http://www.cdhsupport.org


All of our services are FREE, we are run by volunteers and donations.  We give families the opportunity to honor and remember their cherubs while keeping the focus on helping others and working together as a whole CDH community to help our children.  Our priority is YOU, the families affected by Congenital Diaphragmatic Hernia.   Our charity is run by YOU, the families affected by Congenital Diaphragmatic Hernia.   Our families.  OUR charity. Our focus isn't about marketing our name or charity.... it's raising awareness and research and helping families.  We think we do a pretty good job at it!  :)

The Alliance of Congential Diaphragmatic Hernia Organizations

Congratulations to Jana Lewallen, new Chairperson of ACDHO!

http://www.acdho.org

The site is still under construction, there are a lot of new CDH groups to add and guidelines to tweek but we are so excited to have a new Chairperson and new site!  ACDHO is a wonderful group and a huge asset to the CDH community.  Through it's members, it gives parents a wealth of accurate information and compassionate support, builds research and awareness collaborations and offers CDH families and researchers a source of safe and positive referrals.

The member list is under construction - lots of new groups will be voted on and added.   Those listed are either members, have been invited or will be voted on ASAP.    To suggest a group, please visit the web site.

Members of ACDHO can bear the following distinguishing seal:

Yes, it's just a graphic but it can be beacon of hope and trust to CDH parents searching for support and accurate information.   After all the CDH community has been through the past few years with trademarks and drama, all CDH families need a safe place to turn to made up of people and groups that they can trust in, participate in, support - without adding worry to the stress that they are already dealing with with Congenital Diaphragmatic Hernia.

ACDHO is a group of people who want to work together in a professional and productive manner.   Who put the entire CDH community first.  It's members include CDH Researchers - including all the world's best CDH researchers by membership through their research hospitals or through Medical Advisory boards of ACDHO's charity members.  It also includes CDH charities and groups who wish to work together to help families affected by Congenital Diaphragmatic Hernia.

This is a new decade and new CDH community - a grown up CDH community without behavior that's detrimental to the cause we should all be supporting.  The members of ACDHO have turned their heads away from the negativity and look forward to a bright future of shared common goals in a positive environment.

CHERUBS looks forward to working with the researchers, charities and groups in ACDHO and being a part of something full of hope and promise for the whole CDH community.

"Leadership is not magnetic personality — that can just as well be a glib tongue. It is not "making friends and influencing people" — that is flattery. Leadership is lifting a person's vision to higher sights, the raising of a person's performance to a higher standard, the building of a personality beyond its normal limitations" - Peter Drucker


Mission Statement:  The Alliance of Congenital Diaphragmatic Hernia Organizations is a group of CDH charities, sites and researchers working together to bring support, research and maintain integrity in the CDH Community.

The organizations and people in ACDHO strive to help babies and families affected by Congenital Diaphragmatic Hernia by offering research, support, funds or other services with positive, productive and professional working relationships within the CDH community.

ACDHO members are chosen for their integrity and the respect that they show to CDH families and other organizations and most of all, for their desire to work as one community keeping the best interests of CDH babies at the forefront of all services.

ACDHO has a new leader and a new site, along with the "ACDHO Seal of Integrity" so that CDH parents will know which groups have their best interests at heart and which hospitals have an expertise in CDH care.

Stay tuned for more information!

Please change your profile photo today in memory of a baby lost to CDH

The CDH community gained another angel last week... little Andrew. We have lost quite a few cherubs lately and it's left such a feeling of helplessness and we wall want and need to do something to help and make a difference.

We are starting a new tradition at CHERUBS and within the CDH community today that we hope you will all participate in.

Visit Andrew's Blog to read about his brave battle against CDH

The CDH Community is changing our profile photos on Facebook, Myspace and other social networking sites to the CDH Awareness Ribbon to raise awareness in memory of little cherub Andrew who will be laid to rest.

This is something new that we are starting to do to come together as a community and show unity to pay our respects to those cherubs who earn their wings. We will do this every time a cherub earns their wings to raise awareness of Congenital Diaphragmatic Hernia in their memory.

We are using the official cloud ribbon as seen on CHERUBS profile photo today (the one voted on by CDH families, not used by any other causes and used in 38 countries around the world)... we truly hope no one tries to make this a ribbon / group competition or takes anything away from the positive support we are trying to show Andrew's family today.

Feel free to use the above Congenital Diaphragmatic Hernia Awareness Ribbon graphic.

3rd Annual Jack's Baby Shower in Huntsville, Arkansas for the Jack Ryan Gillham Foundation on October 18, 2009

The Jack Ryan Gillham Foundation is a fellow member of ACDHO and we're proud to post their upcoming event!

On October 18, 2009 from 2:00 - 4:00 pm, the Jack Ryan Gillham Foundation will be hosting the 3rd Annual Jack's Baby Shower at the Carroll Electric Building in Huntsville, Arkansas.

At this event we will gather needed items for the Ronald McDonald House and Arkansas Children's Hospital. There will be food, drinks, and a bouncy house for the kiddos!! So bring your family and come on out!!

http://www.jackryangillham.org/Current_Events.html

International Congenital Diaphragmatic Hernia Study Group Participating Hospitals

CHERUBS is proud to work with the hospitals participating in the International CDH Study Group and to share our research database findings so that together we can help find the cause, prevention and best treatments for CDH. Thank you to Drs. Kevin and Pam Lally for all of their support of CHERUBS and for all their dedication to families affected by CDH.

CHERUBS 2009 Conference ACDHO Attendees
Dr. Daryl Scott (Baylor CDH Study), Dr. Kevin Lally, Dr. Pam Lally (CDH Study Group), Danielle Kessner (CHERUBS Australia), Brenda Lane (CHERUBS UK), Michelle Brown (Little Lambs), Kim Richards (Olivia Raine Foundation) and Dawn Williamson (CHERUBS). Not in the photograph but also in attendence were Dr. Meaghan Russell and Dr. Mauro Longoni (Boston CDH Study)



CHERUBS at the 2009 American Pediatric Surgical Association Conference in Puerto Rico
Brenda Slavin, Dawn Williamson and Barbara Wagner

The following hospitals see many cases of CDH a year and participate in research with the International CDH Study Group. They do not respresent all hospital that work with CDH patients. This list should not be used to chose a particular hospital for your cherub.

• Sydney Children’s Hospital - Randwick NWS Australia
• Royal Children’s Hospital - Parkville Victoria Australia
• University Hospital Gasthuisberg - B-3000 Leuven Belgium
• Royal Alexandra Hospital - Edmonton Alberta Canada
• The Hospital for Sick Children - Toronto Ontario Canada
• Universitatsklinikum Manneheim gGmbH - Mannheim Germany
• Freie Universitat Berlin - Berlin Germany
• Salesi Children’s Hospital - Ancona Italy
• Ospedali Pediatrico Bambino Gesu - Rome Italy
• Ospedali Riuniti Bergamo - Bergamo Italy
• National Center of Child Health and Development - Tokyo Japan
• Central Hospital Aichi Prefectural Colony - Kasugai Aichi Japan
• Osaka Medical Center for Maternal and Child Health - Izuki Osaka Japan
• Osaka University Graduate School of Medicin - Suita Osaka Japan
• Royal Hospital for Sick Children - Glasgow Yorkhill Scotland
• Astrid Lindgren - Stockholm Sweden
• Sophia Children’s Hospital - Rotterdam The Netherlands
• Children’s Hospital of Alabama - Birmingham AL United States
• St. Joseph’s Hospital & Medical Center - Phoenix AZ United States
• Phoenix Children’s Hospital - Phoenix AZ United States
• Cedars Sinai Medical Center - Los Angeles CA United States
• San Diego Children’s Hospital - San Diego CA United States
• University of California San Diego - San Diego CA United States
• Children’s Hospital of Los Angeles - Los Angeles CA United States
• Children’s Hospital of Oakland - Oakland CA United States
• Loma Linda University Children’s Hospital - Loma Linda CA United States
• Lucile Salter Packard Children’s Hospital - Pal Alto CA United States
• Mattel Children’s Hospital at UCLA - Los Angeles CA United States
• Yale New Haven Children’s Hospital - New Haven CT United States
• Children’s National Medical Center - Washington DC United States
• Arnold Palmer Hospital for Women & Children - Orlando FL United States
• Shands Children’s Hospital/University of Florida - Gainesville FL United States
• Emory University - Atlanta GA United States
• Medical College of Georgia - Augusta GA United States
• University of Chicago - Chicago IL United States
• Children’s Hospital of Illinois - Peoria IL United States
• Lutheran General Hospital - Park Ridge IL United States
• Rockford Memorial Children’s Hospital - Rockford IL United States
• James Whitcomb Riley Children’s Hospital - Indianapolis IN United States
• Children’s Mercy Hospital - Overland Park KS United States
• University of Kentucky Medical Center - Lexington KY United States
• Kosair Children’s Hospital - Louisville KY United States
• Tulane University Hospital - New Orleans LA United States
• Children’s Hospital Boston - Boston MA United States
• Massachusetts General Hospital - Boston MA United States
• University of Michigan Medical Center - Ann Arbor MI United States
• Children’s Hospital of Michigan - Detroit MI United States
• DeVos Children’s Hospital - Grand Rapids MI United States
• St. Paul Campus Children’s Minneapolis - Minneapolis MN United States
• Children’s Hospital ofMinneapolis - Minneapolis MN United States
• Mayo Clinic - Rochester MN United States
• Cardinal Glennon Children’s Hospital - St. Louis MO United States
• St. Louis Children’s Hospital - St. Louis MO United States
• University of Mississippi Medical Center - Jackson MS United States
• University of North Carolina - Chapel Hill NC United States
• Children’s Hospital at Carolinas Medical Center - Charlotte NC United States
• Duke University Medical Center - Durham NC United States
• North Carolina Baptist Hospital - Winston-Salem NC United States
• University of Nebraska Medical Center - Omaha NE United States
• University of New Mexico Medical Center - Albuquerque NM United States
• Strong Children’s Hospital - Rochester NY United States
• Children’s Hospital of Buffalo - Buffalo NY United States
• Children’s Hospital of Akron - Akron OH United States
• Cincinnati Children’s Hospital Medical Center - Cincinnati OH United States
• Cleveland Clinic Foundation – Children’s Hospital - Cleveland OH United States
• Columbus Children’s Hospital - Columbus OH United States
• Miami Valley Hospital - Dayton OH United States
• Rainbow Babies and Children Hospital - Cleveland OH United States
• St. Francis Children’s Hospital - Tulsa OK United States
• Legacy Emanuel Children’s Hospital - Portalnd OR United States
• St. Christoper’s Children’s Hospital - Philadelphia PA United States
• Children’s Hospital of Philadelphia - Philadelopha PA United States
• Hershey Medical Center - Hershey PA United States
• University of Puerto Rico Medical Center - San Juan Puerto Rico United States
• Hasbro Children’s Hospital - Privdence RI United States
• Medical University of South Carolina - Charleston SC United States
• T.C. Thompson Hospital - Chattanooga TN United States
• Vanderbilt Children’s Hospital - Nashville TN United States
• Santa Rosa Children’s Hospital - San Antonio TX United States
• Texas Children’s Hospital - Houston TX United States
• University of Texas Medical Branch at Galveston - Galveston TX United States
• Wilford Hall USAF Medical Center - Lackland AFB TX United States
• Children’s Hospital of Austin - Austin TX United States
• Cook Children’s Medical Center - Ft. Worth TX United States
• Memorial Hermann Children’s Hospital - Houston TX United States
• Primary Children’s Hospital - Salt Lake City UT United States
• University of Virginia Health System - Charlottesville VA United States
• Medical College of Virginia - Richmond VA United States
• Children’s Hospital of Wisconsin - Milwaukee WI United States

(thank you to Mandy Sroka for typing up this list for us!)


Interested in our Adopt A Hospital Program? Please let us know!

CHERUBS and the American Pediatric Surgical Association

5/31/09 Repost:



This week in Puerto Rico, 3 CHERUBS Board Members represented our organization and CDH families at the APSA convention.

We were able to talk to 100's of pediatric surgeons and start projects with several of them. We have an amazing project going on with the CDH Study Group, a group of about 90 CDH centers. We talked with doctors from every CDH center; we talked with many of the best CDH researchers in the world. We supplied data for families, ribbons for doctors (that were even worn during research speaches). Several surgeons even came up to us and thanked us for being there and for all we do for CDH families.... that touched our hearts so much to know they think we're doing a great service for their patients!!! We won't name all the doctors we talked to and we won't reveal our projects right now but we do want to thank the following for their invaluable information; Kevin and Pam Lally, Michael Harrison, David Kays, Priscilla Chui, Charles Stolar, Duncan Phillips, Bradley Rodgers and the doctors at UCSF, Boston Children's, Duke, CHOP, Cinncinnati Children's Hospital, the Canadian Pediatric Surgical Association and ACDHO.

The conference went incredibly, amazingly well. We learned A TON about so many different things and now have all the absolute latest research on CDH. We talked with many surgeons on ways to help families, create more CDH awareness and research together. It was an extremely exciting and productive meeting.

We even went snorkeling with a few of the surgeons and shared flights with some as well. Every opportunity educated us more and more about CDH and what all CDH research centers (including CHERUBS) has to offer.

On Saturday we also met in person with Pam Lally of the CDH Study Group and looked over each of our databases (confidentially of course) and spent a few hours discussing our research and findings for both organizations. We have big, big, BIG plans and are so incredibly proud and honored to working with the CDH Study Group and all 90 CDH Research Centers. It is CHERUBS objective to work with ALL CDH research centers and to accomplish as much as possible in the realm of CDH Research.

It took us 14 years to get here - but we did it. To do this research and have it make a difference. This is our 3rd attendance at an APSA conference - CHERUBS was the very first non-profit ever admitted into this event in 1995. In 2009, most of the surgeons knew exactly who CHERUBS is and what we stand for! We have come a long, long way since then!! We truly could not have had a more positive or productive conference or been made to feel more comfortable and welcomed and like part of the group.

I have to say thank you to Barb and Bren…. they both did an amazing, amazing job and I am so, so proud of them and so grateful to them. Our Board Members paid for our travel expenses out of our own personal pockets and conference costs were paid for by grants. Not a single penny from donations went to help send CHERUBS to this conference but 1000's of CDH families will benefit from all the amazing things are happening!

It's been an absolutely incredible week for CHERUBS and for all CDH families around the world!

Stay tuned for more details, more research news and more research data!

CHERUBS and the American Pediatric Surgical Association

This week in Puerto Rico, 3 CHERUBS Board Members represented our organization and CDH families at the APSA convention.

We were able to talk to 100's of pediatric surgeons and start projects with several of them. We have an amazing project going on with the CDH Study Group, a group of about 90 CDH centers. We talked with doctors from every CDH center; we talked with many of the best CDH researchers in the world. We supplied data for families, ribbons for doctors (that were even worn during research speaches). Several surgeons even came up to us and thanked us for being there and for all we do for CDH families.... that touched our hearts so much to know they think we're doing a great service for their patients!!! We won't name all the doctors we talked to and we won't reveal our projects right now but we do want to thank the following for their invaluable information; Kevin and Pam Lally, Michael Harrison, David Kays, Priscilla Chui, Charles Stolar, Duncan Phillips, Bradley Rodgers and the doctors at UCSF, Boston Children's, Duke, CHOP, Cinncinnati Children's Hospital, the Canadian Pediatric Surgical Association and ACDHO.

The conference went incredibly, amazingly well. We learned A TON about so many different things and now have all the absolute latest research on CDH. We talked with many surgeons on ways to help families, create more CDH awareness and research together. It was an extremely exciting and productive meeting.

We even went snorkeling with a few of the surgeons and shared flights with some as well. Every opportunity educated us more and more about CDH and what all CDH research centers (including CHERUBS) has to offer.

On Saturday we also met in person with Pam Lally of the CDH Study Group and looked over each of our databases (confidentially of course) and spent a few hours discussing our research and findings for both organizations. We have big, big, BIG plans and are so incredibly proud and honored to working with the CDH Study Group and all 90 CDH Research Centers. It is CHERUBS objective to work with ALL CDH research centers and to accomplish as much as possible in the realm of CDH Research.

It took us 14 years to get here - but we did it. To do this research and have it make a difference. This is our 3rd attendance at an APSA conference - CHERUBS was the very first non-profit ever admitted into this event in 1995. In 2009, most of the surgeons knew exactly who CHERUBS is and what we stand for! We have come a long, long way since then!! We truly could not have had a more positive or productive conference or been made to feel more comfortable and welcomed and like part of the group.

I have to say thank you to Barb and Bren…. they both did an amazing, amazing job and I am so, so proud of them and so grateful to them. Our Board Members paid for our travel expenses out of our own personal pockets and conference costs were paid for by grants. Not a single penny from donations went to help send CHERUBS to this conference but 1000's of CDH families will benefit from all the amazing things are happening!

It's been an absolutely incredible week for CHERUBS and for all CDH families around the world!

Stay tuned for more details, more research news and more research data!

CHERUBS "Adopt A Hospital" Program

Would you like to help families affected by Congenital Diaphragmatic Hernia? Would you like to do something in honor or in memory of a cherub? CHERUBS has created a new program that will soon be helping CDH families across the country.

There are 2 options to our Adopt A Hospital program:

Adoption Plan #1 - You order / print out the list of items below and take them to the hospital. You also become a CHERUBS Hospital Ambassdor for new CDH families at that hospital and you periodically refurnish the materials.

Adoption Plan #2 - You make a $100 donation to CHERUBS and we order and put together the materials and send them to the hospital in honor / memory of your cherub.

CHERUBS Adopt A Hospital Care Package Includes:

1 copy of "Stories of Cherubs" Volume I
1 copy of "Stories of Cherubs" Volume II
1 CDH awareness poster
20 Parent Reference Guides
50 CHERUBS CDH Info Brochures
50 CDH Awareness Ribbon Pins
10 copies of our latest newsletter

Each item (except the CDH ribbon pins) is labeled with a sticker that says "Donated in honor of ________" or "Donated in memory of _________"

These items are then available to all CDH parents admitted into these hospitals. Upon joining CHERUBS, new parents will soon receive more information and support through our Gabe's Gifts program.

These items are an invaluable source of support and information for families affected by Congenital Diaphragmatic Hernia. Because there are so many hospitals, CHERUBS cannot possibly afford to donate to all hospitals and we are inviting our members and the general public to help us to help CDH families.

If you would like to Adopt A Hospital, please contact us at volunteer@cherubs-cdh.org

ACDHO - groups / organizations that truly help and support CDH families and the CDH Community

ACDHO - The Alliance of Congenital Diaphragmatic Hernia Organizations
http://health.groups.yahoo.com/group/acdho/

Alliance of many CDH Organizations supporting families and research of Congenital Diaphragmatic Hernia. This listserv is for organization founders, presidents and CEO's to keep each other abreast of research studies, new procedures, and organization problems. By working together as a team we can support each other, and the babies and families, in the fight against CDH.

These are the CDH organizations that truly support these babies and work together. We are a large Global CDH community working to increase research, make sure that all families have information and support and protect CDH awareness so that it belongs to all.

Each organization in ACDHO is equal, there are no leaders. Organizations / groups / sites invited into ACHO have shown high integrity in helping CDH families, offer research or support for CDH and a clear desire to work with the entire CDH community. Invitations are by a majority vote to secure that ACDHO goals remain positive, that the group works well together and that ACDHO is a safe environment to work together to help CDH families.

This listserv / alliance is *not* for individual CDH parents, survivors, etc. Please join the various groups and organizations for CDH information, support, research and awareness that offer services at the member level for CDH families.

Organizations / sites / groups that are members or who have been invited and that show a high degree of integrity in helping the CDH community and that we support are:

CHERUBS
CHERUBS Australia
CHERUBS UK
CHERUBS Mexico
A Rainbow of Hope
Jack Ryan Gillham Foundation
Olivia Raine Foundation
Cody's Foundation
Kays Kids / Real Hope For CDH
Johns Hopkins Unnamed CDH Group
Little Lambs
The J.C. Nicholson II Research Foundation
En Stitching Hernia Diafragmatica (The Netherlands)
Ernia Diaframmatica Congenita gruppo di supporto (Italy)
Association Hernie Daphragmatique (France)
International CDH Study Group
Toronto Children's Hospital CDH Clinic
UCSF Fetal Treatment Center
Boston Children's Hospital / Harvard University CDH Clinic
CHOP CDH Clinic
Wisconsin Children's Hospital
Vanderbilt Children's Hospital
St. Louis Children's Hospital / Washington University CDH Research
University of Florida, Shands, CDH Clinic

Please show your support to these groups and organizations who support CDH families!

Jack's 2nd Annual Cruise for Compassion

CHERUBS is a huge fan of the Jack Ryan Gillham Foundation, if you are in Arkansas, please try to attend!

Host:	The Jack Ryan Gillham Foundation
Network:	Global

Date:	Saturday, May 2, 2009
Time:	9:00am - 7:00pm
Location:	Begins and ends at Georges on Dickson St. in Fayetteville
City/Town:	Fayetteville, AR

Phone:	4793050448
Email:	jackscruise@gmail.com

Jack's cruise for compassion is a poker run geared toward raising funds for families of critially ill babies. There will be lots of great scenery, live music and cash prizes!!

Registration begins at 9:00am at Georges on Dickson St. in Fayetteville with the last bike out at 11:00am.

Stops will be at the Iron Horse Saloon in Prairie Grove, Cherokee Casino in West Siloam Springs, and Jose's Southwest Grille in Springdale.

Last bike in by 3:00pm at Georges on Dickson St. in Fayetteville.

We will also have a Springfest booth where poker hands and JRG Foundation merchandise may be purchased.

Winners will be announced at 3:30pm - CASH PRIZES!!!

You don't have to have a bike to participate...fun for everyone!!!

More info on this event can be found on our website - www.jackryangillham.org

We are also seeking volunteers!! If you are interested, please email jackscruise@gmail.com.

The Alliance of Congenital Diaphragmatic Hernia Organizations

CHERUBS is proud to be a member of ACDHO (The Alliance of Congenital Diaphragmatic Hernia Organizations). ACDHO was formed to build a stronger CDH community, with emphasis on working together in a professional and supportive manner, encouraging CDH Awareness and fighting against the ownership of it, increasing CDH Research and mostly to collectively offer CDH Families the most support possible.

The following organizations also honor such a high code of ethics and we are so happy that they are in existence helping in this fight against CDH:

CHERUBS

CHERUBS Australia

CHERUBS UK

CHERUBS Mexico

Rainbow of Hope

Jack Ryan Gillham Foundation

Olivia Raine Foundation

Kays Kids / Real Hope For CDH

Johns Hopkins Unnamed CDH Group

Little Lambs

En Stitching Hernia Diafragmatica (The Netherlands)

Ernia Diaframmatica Congenita gruppo di supporto (Italy)

Association Hernie Daphragmatique (France)

CDH Study Group
Boston Childrens CDH Clinic

CHERUBS has been working with many of these organizations for years and some are very new. We have also been working with all CDH clinics and fetal care centers since the first one opened it's doors in San Francisco in the early 1990's. Of course there are more CDH clinics and hospitals who are involved and supportive as well! And we all have 1 thing in common - the desire to help families dealing with Congenital Diaphragmatic Hernia without any competition amongst each other, any ulterior motives and the drive to see "Congenital Diaphragmatic Hernia Awareness" given back to the families and researchers.

This is what Congenital Diaphragmatic Hernia Support is all about and we are so proud to be a part of it!

Congenital Diaphragmatic Hernia Newsletter

We just uploaded the latest issue of CHERUBS newsletter -

http://www.cdhsupport.org/newsletter/Winter09SilverLining.pdf