Friday, June 11, 2010

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 OrganizationsWe 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 - 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 -

CDH Research Congressional Bill -

Adopt A CDH Hospital Campaign -

Save the Cherubs Campaign -

International CDH Conference -

CDH Forums -

CDH Research Database -

CDH Newsletters -

CDH Baby Book -

CDH AWareness Items -

CDH Awareness Ribbons -

Info for Expectant Parents -

Info for Survivors -

Info for Expectant Parents -

CDH Fundraisers -

CDH Calendar -

CDH Research Fund, Awareness Fund, Family Assistance Fund, Support Fund and Scholarship Fund -

Angel Ball -

CDH Videos -

Member Photo Albums -

Member Blogs -

Blog Ring -

CDH Awareness Ticker -

CDH News -

These are just a few of our services.  You can see all that we do at

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!  :)

1 comment:

Anonymous said...

We found out our baby girl that is due in Sept has CDH. We found the CHERUB website and have so much info already. Support from other parents. Through Cherubs we have been able to talk with other parents and read blogs, without this site I feel I would still be lost. Yesterday was my birthday and I recieve our CDH tote bag. Nothing meant more to me than receiving that. Everything that was sent was wonderful. Very thankful for CHERUBS!! And all the members.