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Thread: Cliques, depressing site, donations, drama and other MYTHS

  1. #1

    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.

    - 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.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    I think you laid it all out Dawn! I completely feel and have always felt welcome here from day 1 ~ the support here is amazing! i hope the visitors and members of this site can find some of what I found here . I agree we dont need Drama here, there are enough struggles with CDH and daily life period than to have to have it here, this should be a place of support and friendship!

  3. #3
    Thanks, Penny. There are more, worse ones that I won't post because well, they are just ugly and don't deserve the effort to be typed out. But I'm hoping that we can just post stuff here and laugh about it.

    Also for the record...

    - I don't have horns. Lots of grays, but not horns. No halo either.

    - I am educated, I do have teeth and just because I live in NC it doesn't make me a redneck! If anything, I am a computer geek.

    - I don't lie, especially under oath. Sometimes I should learn to lie but don't so don't ask my opinion unless you really want it.

    - I am a Christian, but that shouldn't be a job requirement here

    - I am not stuck up at all, though I am shy

    - I can't speak loudly unless I scream no matter how hard I try

    - I have committed 2 crimes; 1 speeding for which I got a ticket but it was dismissed, 1 for occasionally jaywalking because I always forget that law! I've been accused of others, but that's complete slander that's been proven to be jealous slander time and again.

    - I am really, really, really patient for a long time but when I snap, I hold nothing back and don't take any BS.... hence the need for this post! lol.

    - I don't roll in the mud and won't allow CHERUBS to either. If we have to confront something we do so honestly and with only facts and without personal attacks or cat fighting. But only when we have to - which has only been a few times in 13 years - so given that we have over 2500 members and are dealing with such emotional topics as CDH and grief and sick kids - really, we've been blessed we've only had a handful of issues.

    - CHERUBS has never, ever filed false charges or accusations against another organization or person. Ever. We've never tried to have any group shut down, no matter what's been done to us. We've never started rumors or lies to turn people away from other groups. That's not what we're about or what we're here for.

    - We have and will support any other organization with pure motives to only help CDH families without drama. And there are some! CHERUBS UK and Australia, the Dutch group, Italian Group, Little Lambs, Kays Kids, the Olivia Raine Organization and Jack Ryan Gillham Organization... all great organizations with great motives and good hearts and we recommend them all.

    - Yes, we are starting a research site and a research project but no I won't give too many details here yet

    - Yes, we are talking to a celebrity's manager (and have been for months now!) about being a celebrity spokesperson because her child had CDH. And no, not posting who that is either yet.

    - Yes, we're having the conference again next year and no, not sure where yet

    - Yes, I am slllloooooowwwww answer e-mails and sometimes I can't respond to everything here but I do try to read everything and keep up as best I can... please don't take it personally

    - Yes, we have a ton of projects going and we start a lot of projects that we can't finish because of lack of time or money but we do try our best and we are only human

    - No, we don't have money. Usually less than $200 in the bank at any given time. No, I'm not exaggerating and yes I know we have 2500 members but we also don't beg our members for donations either.

    - Yes, we have a marketing company helping us now. Yes, the are volunteers. So are our event planners, auction company, caterers and others. We implore volunteers rather than hire anyone as much as we can, including our accounting and legal services and other services and I do all the web design and graphic design (not the programming for everything - I wish I knew how to).

    - I'm 5'9", 135 lbs, hair color compliments of Miss Clairol, eyes hazel, I like Italian and Mexican food, I love long long walks on the beach and my favorite color is red. Anything else you want to know, just ask. LOL

    And......

    - We have the most amazing members!!!! Just good people who all only want to help each other without any other motives. Are we not incredibly blessed?
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  4. #4
    Great job Dawn! We are all parents/family members of CDH children and the stress of that is more than enough for one person to deal with. You are all such amazing people and I thank you for all the work you do each day to help educate the public and help others!
    Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>

  5. #5
    You said it perfectly Dawn!! I have never ever felt like there were cliques or the groups of "populars" here. From the moment I joined cherubs, I felt like I knew you all for years. Living with CDH, or in my case the grief of CDH, is more than enough drama and trouble for a lifetime and here we get to understand and be understood by everyone, what more could you ask for really?
    Mommy to Haylee 01/26/2004 and My cherub Asher 07/04/2007- LCDH discovered at 18 weeks- medical termination at 24 weeks. Hypoplastic left lung and right jaw- pulmonary hypertension- Secundum type ASD- left liver lobe- stomach- appendix- and small bowel herniated www.freewebs.com/babyasher Ashers webpage http://www.youtube.com/watch?v=dxS8F4dkHjE Ashers video montage

  6. #6
    I have read some of the slander when I first joined Cherubs and was shocked! If you want to put up an argument, do it with facts and not personal insults and opinions. Any good deeds were overshadowed by ugly rumors and spite. How can there be cliques here when we RARELY see one another if ever? I am here because I choose to be here and if it ever became uncomfortable I would just never log on again. I knew where my donations and time were going before I ever volunteered a minute or a dime to Cherubs. I am an educated woman and I do not throw my money or tears away on something without first doing my homework. And, yes,this time I did use my heart a little more than my head but after all I have been through this year, I have that right. I think of the pictures of everyones children (survivor or not) here as just that, baby pictures. Just like anyone would have at work or at the grocery store to whip out and show you. These are my friends kids pictures and who the heck else are you gonna show your kids pictures to besides your friends? Dawn you are doing a great thing here and I don't care what you do in your spare time, if you eat live buzzards by light of the full moon I DON"T CARE! I for one just like most folks here are smart enough to understand what a non profit organization is and what your status means, what the government monitors, how you can spend the donations, what you have to justify so I dont' worry about the money part or I would keep my pocketbook shut. Anyone who does not understand how that works should take their time to learn instead of wasting it complaining and slandering Dawn, Cherubs and its members. My hubby and I worked our butts off to earn the money to come to the conference. We did not get any other invite than others got. I am from NC too and I wear shoes, and my knuckles do not drag the ground. So when others bash Cherubs I take it personally because I am a member and so are some of my best friends and NOBODY picks on my friends!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  7. #7
    "if you eat live buzzards by light of the full moon" .... Lynne, thank you for that lovely visual that I will now carry with me all day. ROFL. But sincerely, thank you Lynne, Amy and Kim and everyone. I'm not really worry about any of the myths and such as long it doesn't stop new parents from finding support here. Every one here knows the truth and that's all that matters. The rest... just going to laugh about because it's just not worth getting upset over... that's the goal any - to upset us, prevent parents from joining or donating. I'm too stubborn to let immature behavior have that much power. So let's just use this space to clear up any misconceptions and not get upset or have any drama over this.

    Uploading the financial paperwork now. You're so right about the government, Lynne! I can't wait for the day when we can hire an accountant to take over all the financial stuff. I'd much rather spend my time talking to you all here!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  8. #8
    I hope you have a great day Dawn and please for your tummy's sake, eat a burger today!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  9. #9
    I'm so sorry that there are people trying to give false information about Dawn and Cherubs to other CDH families. I agree with Penny, Amy, Lynne and Kim. I've been here pretty much since the doctors diagnosed Juan Pablo and even though I started posting just a few months ago, I've always felt welcome here and now I can tell you that I've made real and close friends here.

    To all those people who have the time to make and say that nonsense... I'll say get a life!
    Fer Mom to Ana (29-11-2001) Mom to Juan Pablo (1-6-2007) born with a right sided diaphragm eventration- a rare type of CDH- severe reflux and speech delayed with signs of autism Juan Pablo- a Tribute to Life at http://es.youtube.com/watch?v=DYQAqMoTaiQ Our family blog at www.arcephoto.blogspot.com (if you want to visit- email me at maferarceamare@gmail.com so I can send you an invite)

  10. #10
    You did a great job Dawn!! I know in the short time that I have been a member of Cherubs, I have made nothing but wonderful friends.
    Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg

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