Cliques, depressing site, donations, drama and other MYTHS
Hi Everyone,
I've received 2 msgs this week from upset parents and in both cases the reasons they were upset were completely false. I won't give details, I just thought that both reasons deserved a response here so that no one else would be misguided as I hate to see parents upset, especially needlessly! So here are few things that we need to set the record straight on and feel free to comment or add anything. :)
Just a note that this particular section of the forum is public so anything you post here can be seen by anyone, not just members.
Misconceptions, false statements and myths about CHERUBS:
- Everyone at CHERUBS is equal. Everyone. There are no cliques at CHERUBS. No little groups, no popular girls, etc. This isn't Jr. High. The more you post, the more people respond and get to know you. It's that simple.
- CHERUBS is free. It always has been and will always be free as long as I'm President.
- Donations are not mandatory. Less than 2% of members donate annually. And that's ok.
- Conferences and get-togethers are not just for popular members or members with money. Really, most of us who attend have to scrimp and save to get to events. See above about how there are no "popular" people here.
- There are no autopsy photos on our site, never have been. That was started by someone trying to keep parents off of our site. Yeah, that one baffles me too. ;)
- No one at CHERUBS is paid a salary. No one.
- CHERUBS does not pay for search engine rankings, especially out of donations. I'm a web designer, I know how to SEO so we don't have to pay.
- Yes all of our members are real people. Real families and real doctors. Every one of them.
- We've never infringed on anyone's copyright or trademark. Ever.
- CHERUBS site isn't dark and depressing. It's bright and cheerful. If you can read this posted here, you can see that. :)
- Less than 10 people have been kicked/banned from CHERUBS in 13 years and not for disagreeing. The reasons were; filing false charges, public slander, stealing, or being drama queens hurting other members. Everyone at CHERUBS is free to say how he/she feels.
- Our Board Members know everything that goes on here - that includes all of our Medical Advisors.
- Our Advisors vote. This is not a dictatorship.
- We are a 501(c)III organization and have been since 1995. We got an updated letter from the IRS that I requested in February that finally came in stating just that. Posting that tonight.
- Our Financial Reports are available for downloading. I'll be adding our 2007 report and tax return to the site tonight.
- I volunteer for CHERUBS full-time. Full time, as in over 40 hours a week. I also work a regular job and run my own company to pay my bills. I am single and no one, especially CHERUBS, helps to pay my bills. No, I don't sleep much. Yes, I'm a workaholic. But I love what I do. :D
- Our volunteers all have families and many also have jobs. We do what we can, when we can. None of us are paid. All of us ask for your patience and consideration.
- No member gets more benefits than another member. Everyone is equal. It does not matter how much you volunteer or donate.
- There is no drama at CHERUBS. NO DRAMA. We do not put up with it here, period. If you can't get along with others, are catty or two-faced or gossipy - then please take your membership elsewhere. We work very hard to keep CHERUBS safe and friendly and a source of support.
- We track visitors to our sites, all of them. We have to. We've been hacked too many times, stalked too much and I keep records of everything for court. It's sad we have to do this but unfortunately it's necessary because there are mean people in the world. :(
- It doesn't matter how many CDH groups you belong to. We just don't care. We want everyone to get as much support as possible from as many places as possible. We just don't want any drama from other groups on our site.
- You can volunteer for other groups and still be a member of CHERUBS. You just can't file false charges against CHERUBS as a board member of another group and try to have us shut down and expect to be welcomed here.
- Only CHERUBS members are allowed at CHERUBS conferences and get-togethers. This is to avoid drama and to make sure that members feel comfortable.
- CHERUBS is not about Shane Torrence. Shane's photo and name isn't posted much at all. CHERUBS was named after Preston and for all the cherubs who don't survive. The logo is about cherubs, not Shane. CHERUBS is about helping ALL CDH families and remembering and honoring ALL cherubs.
- CHERUBS does not participate in Congenital Diaphragmatic Hernia Awareness Day because of (false) threats about trademark, not because we're boycotting anything or think anyone shouldn't participate. We want EVERYONE to raise CDH awareness as much as possible, in any way possible. CHERUBS chooses to raise awareness with other ways, year-round.
- The Official Congenital Diaphragmatic Hernia Awareness Ribbon is the one in the upper left hand corner of this page. It was voted on by CDH families and this is what the parents chose and it's not owned by CHERUBS or anyone else. Anyone can use it without posting CHERUBS name beside it.
- CHERUBS is 100% original. We were the world's first and we are the world's largest CDH organization. We had the first site, logo, name, mission statement, yahoogroup, blog, collage of CDH photos, postage stamp, stats on CDH & Spina Bifida, stats on how many babies are born with CDH a year, cafepress store, book, info packet, state reps, letters to govt officials, photo albums, cookbooks, etc, etc, etc. We pioneered CDH support - all of us. And we don't stalk the internet searching for people who have followed in our footsteps because who the heck cares about ego and who did what first as long as there is awareness and families are getting help! :)
- CHERUBS does not do research on babies. Yeah, I know, this one is crazy. We encourage parents to participate in research but we do not physically research patients. We do have a research site and take surveys and studies. That is a far cry from cutting or taking blood from children. This is a good example of asking for facts before being gullible. ;)
- CHERUBS makes less than $3 on any cafepress item
- CHERUBS offers local support through all of our State and International Reps and our get-togethers
- CHERUBS doesn't spy on other organizations. We just don't care when in the world do I have time to spy? I have honor, and a life.
- Nothing at CHERUBS site or yahoogroups is filtered or censored. If you say a bad word you'll get a {CENSORED} block but that's it. We don't edit or delete or hide anything. So be careful what you say because you can't take it back!
- There is no judging at CHERUBS. We are here to support each other, whatever decisions we made/make for our cherubs.
- There is more here than just CDH related information and support. We get silly, we get serious, we are friends and we act like such. Friends who truly understand what each other is going through because we have all dealt with CDH.
- This is an extremely important one... CHERUBS is for ALL CDH families - families of survivors, grieving families and expectant families. We have services for all CDH families and we do not offer more to one group than another.
- CHERUBS is a family. Many of us have known each other for over a decade. Many of us have met in real life. We have been through good times and bad times together - CDH related and just life in general too. We're here for each other through everything because CDH does not just affect one aspect of life and everyone needs support through life's ups and downs.
I think that's all but I'm sure there are lots I haven't heard! LOL So let's just dispell them, have a laugh about them and make sure that none of them prevent any CDH families from finding support or information.
