CDH Family Support Fund – this fund covers all support services, including our web sites, newsletters, conferences, New Member Packets, get-togethers and other general operating costs.  CHERUBS does a lot for CDH families and the CDH community and we incur quite a few costs during so.  Just 1 newsletter mailing is now over $3000 for printing and posting with so many members.  Our conferences are also expensive.   Our monthly expenses are several hundred dollars for ink, postage, web site hosting fees, fax number, etc.  It takes a lot to fund an organization with almost 3000 members.  Remember, no one at CHERUBS gets paid and we have no office so every penny directly helps CDH families.  And all of our services are FREE so we do charge membership fees.  Only 2% of our members donate annually so we depend on public donations quite a bit. And the occasional grant as well.

 

• $1 will cover 1 2-pocket folder
• $1 will cover 1 copy of our Parent Reference Guide
• $5 will cover 1 newsletter printing and US postage
• $10 will cover 1 New Member Packet
• $50 will cover our annual non-profit state registration fee
• $50 will cover envelope costs for 1 year
• $50 will cover our volunteer software for 1 month
• $100 will cover staples, paper clips, glue, etc for 1 year
• $100 will sponsor 1 hospital with CDH info for 1 year
• $125 will cover web site hosting fees for 1 month
• $300 will cover 1 local get-together
• $400 will cover printing 5000 brochures
• $500 will cover outside programming fees
• $2000 will cover non-newsletter postage fees for 1 year
• $3000 will cover 1 newsletter printing and mailing
• $5000 will cover 1 international member conference

 

What is CHERUBS?

No one knows what life is like with a child born with CDH like the other parents who have walked this path.  It is a very emotional, stressful, and physically demanding time.  Just knowing you are not alone can make all the difference in the world.  CHERUBS was founded so that no family has to go down this path alone.

 

Our Organization

CHERUBS is an international organization for families and care-givers of children and adults who are diagnosed with Congenital Diaphragmatic Hernia (CDH).  As of May, 2009, we have over 2800 members in all 50 states and 38 countries.  Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, nurse practitioners, parents of CDH survivors and non-survivors, and some of the best pediatric surgeons in the world.  We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.

What is CDH?

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year).  The cause of CDH is not yet known.  The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale.  CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.  This inhibits lung growth.  

Every patient diagnosed with CDH is different.  Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available.  There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems.  A few of the survivors suffer from severe long-term medical issues. 

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage. 

What Can CHERUBS Do For Parents?

Quarterly Newsletters-  We publish newsletters 4 times a year, packed with new CDH research information, pictures and stories of real cherubs, organization updates, advice from parents, and much more.

Parent Reference Guide-  A reference guide for new and expectant parents, filled with information about CDH; definitions of commonly used medical terms, advice, and news from the medical research world.

Online Support-  Each month, parents with access to the Internet are able to communicate live in our own chatroom, from around the world, sharing tips, concerns, and advice.  We have chats for all members and special chats for grieving parents, fathers, and our older cherubs and their siblings.  We also have forums, blogs, personal albums, listservs, links databases, personal messaging system and more to help us maintain contact when not chatting.

Medical Research Library-  We offer our members access to our ever-growing library of medical journal articles and medical books dealing with CDH and the complications that can accompany such long, traumatic hospitalizations.

Parent-to-Parent Matching- Through parent matching, our members can build friendships, talk and listen to other parents, have pen-pals, and share with other parents their triumphs and tribulations.  A listserv discussion group is dedicated to parents reaching others online.

On-Call Volunteers- We have members on-call to listen to parents and help them through the tough times.  Our office is also on-call to listen to parents and answer questions.

Congenital Diaphragmatic Hernia Research Survey-  Our members have the chance to participate in research that may someday uncover the cause of CDH.  By answering family and patient medical history questions, we may find a link that can provide a cure to preventing CDH in babies of the future.

Referrals-  We offer referrals to your local and state support groups and medical research libraries, as well as referrals to those parents wishing to learn more about in utero surgery and tracheal ligation.