Wednesday, July 15, 2009

CHERUBS Impact Upon CDH - Are you working to help CDH Families Too?

Did you know that 90% of all U.S. CDH parents diagnosed prenatally get most of their CDH information through our sites and forums and materials - or through sites and blogs that quote our information? Not all join CHERUBS, most never donate, many never even contact us directly except to view our info on-line. But CHERUBS is there for all CDH families.

CHERUBS is run solely by volunteering CDH parents who want to help other families affected by CDH. We have 50 volunteers who donate their time and hearts.

CHERUBS web site gets over 30,000 hits per month. It has over 10,000 pages. We've published stories of over 400 CDH families. We've publicized photos of over 1000 CDH babies. That's a lot of information and awareness!

We have almost 3000 members in 38 countries. We have the world's largest long-term CDH research database. We have medical Advisors. We work and share data with the International CDH Study Group.

CHERUBS does not charge families membership fees. We have dozens of services and are starting new projects all the time. We care. We work hard. Some of us give up to 8 hours a day, away from our families to help other CDH families.

You may not agree with us fighting the trademark on "CDH Awareness" or standing up against all the nonsense going on. That's ok, that's your perogative. But it's also other CDH parents rights to gain support and information that they need also. It's other CDH parents right to raise awareness freely. At the end of the day, we are standing up for ALL CDH families. Are you? Do you refer CDH families to get ALL the support and help that they can get from any and all resources? At the end of the day, the decisions we make are made to help all CDH families and to protect CHERUBS so that CDH families of the future have support and information that they need too - that every CDH family should have.

Do you want to help CDH families? Do you want to help us help more CDH families? Then let's all be POSITIVE!

If you know a CDH family, refer them to CHERUBS. Let them get information and support that only our forums and almost 3000 members can provide.

Encourage CDH families to attend our events. So that they can meet other families and gain knowledge of CDH.

Join in on projects and events. We need help with projects all the time.

Post about CHERUBS and CDH on your blogs, facebook, etc. Help more CDH families find info and support.

Volunteer at CHERUBS. We need all the help we can get from people who want to be part of a CDH team.

Encourage donations to CDH organizations. We all need them to keep our work going. It costs money to print items, give out ribbons, send packets to families, send items to hospitals, hold events, raise awareness, keep a site going. If you all knew how much money our volunteers spent out of their own pockets just to keep us afloat and here for CDH families!! My husband and I personally foot the phone bill for CHERUBS every month and have donated a lot of items and cash to keep it going. So have other volunteers. To keep our organization FREE for CDH families. So before you ask people to boycott donating to CDH groups because you don't like the fact that we stand up for all CDH parents or try to do the right thing... or to give to hospitals or other large organizations with multi-million dollar budgets... remember that we are here for ALL of you. And as much as we wish we could... we can't fund our work on good intentions and big hearts. Printing companies and web hosting companies prefer cash. :)

And before you post or respond to drama.... give serious thought to what you're saying. Is it true? Is it gossip? Is it right? Are your words CDH community motivated or self-motivated? Are you participating in drama by listening to it and being party to it? It is helping CDH families or turning others away from support that they need? Remember, CHERUBS is a CDH charity. A charity.

So many, many of you all got support and information in your time of need from CHERUBS. We were here for you when your world collapsed. Many of you made countless friends at CHERUBS along with gaining information and support. Some have even taken connections, resources, information and friends from our organization to create their own groups or projects. Did you know that all other CDH group leaders either were members of CHERUBS or attended our events and gained support and information from us long before they started their own groups? CHERUBS was here for them. We're here for all CDH parents. We're still here.

If you've ever read our site and learned something new. If you've ever read our blog or posts here and learned 1 new fact about CDH. If you made a friend through CHERUBS or by having me suggest them there on FB. If you read a story in our newsletter or our site and it helped you to not feel alone. Or you posted your own cherub's story and felt like you could share it with people who understood. Or you got a note on your cherub's memorial day - when no one else remembered. Or you sat at a conference and listened to a CDH researcher teach so many new things. Pass it forward.

Help others.

Stay positive.

Did you know that 90% of all U.S. CDH parents diagnosed prenatally get most of their CDH information through our sites and forums and materials - or through sites and blogs that quote our information?

CHERUBS does make a real difference.

We are here to help.

Please help us to help CDH families.

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