CHERUBS - Questions & Answers

Membership	Stories & Pictures	Donations	Matching
Our Web Site	Volunteers	On-Line Services	Requesting Information
Newsletters	Surveys	E-Mail	Copyrights
	Medical Referrals	Phone Calls

Membership

How do I join CHERUBS?

You can join by filling out our membership form for families or professional membership page. You can also download and print your membership form and mail it in through regular postal mail.

Who can join?

Parents, grandparents, adoptive parents, foster parents, and adult survivors can join our family membership. Pediatric surgeons, nurses, neonatologists, epidemiologists, pulmonologists, respiratory therapists, and social workers can join our professional membership.

Does it cost anything to join?

CHERUBS does not charge families membership fees. If you can afford to, you can make annual donations of $20.00, but it is not required and you will not be billed. Professional members are asked to pay $30.00 annual membership fees.

The membership form doesn't seem to be working, what should I do?

Sometimes older browsers may have trouble. You can download and mail in a membership from.

Why haven't I received my membership packet?

Right now we have had to temporary stop sending out membership packets until we can afford to print and mail them again. However, you can find all the items included in the membership packets here. Want to donate time and money to help us start this service again? Click here for information.

Is there a way to receive my membership packet right away?

If you need information immediately, most of the information in the membership packet is available on-line on our downloads page. The only information not available to download is your CDH Survey (10-page research form) and Parent Matches. Please download and print the information on our site and we will send you your packet as soon as possible.

If you have all this information on-line, why should I become a member?

We have quite a bit of information and services available on-line to families, but only members can participate in our chats, forums, photo albums, blogs, CDH Survey, receive Parent Matches, subscribe to our newsletter, and attend off-line events such as our International Member Conference. By becoming a member you also help us influence the medical community through our research and patient advocacy programs. The larger our membership, the more influence we have. Membership is free to families, so why not join?

If I join do I have to participate in all the activities?

You participate as little or as much as you'd like. You don't have to participate in any activities, volunteer, or be matched with other families and still join. We realize that each family and parent is different and your lifestyle or emotions might make it hard for you to be involved in some or all of our activities. You can always join in or pull back on your activities in CHERUBS.

Who reads the membership forms?

The only people who read your form are our President and New Member Coordinator.

Is the information I put on my form confidential?

Your form is 100% confidential. The only time any information is released is if you would like to be matched with other parents or put in touch with other organizations and you must give permission to do so. The information released for parent matching is your name, address, phone number, e-mail, your child's name, dates (birthday and memorial day), and a brief medical history (left-sided CDH, 3 repairs, heart defects, feeding problems, asthma, etc...). If you would like to release only certain information, it is as simple as writing that in your form- "please do not release my phone number or child's name".

Do I have to answer all the questions?

The more you answer, the more you will help us with our research. If you do not know the answer to a question, please do not guess, this makes your answer inaccurate (ex: You're not sure what type of CDH your child had but the doctor told you he/she "had virtually no diaphragm" so you answer "Agensis of the Hemidiaphragm". More often than not, the doctor did not mean there was no diaphragm at all because this is extremely rare). If you are still expecting your cherub, please answer as much as you can now and fill out another form once your child is born and stable.

Do I have to have a computer to join?

You do not have to be on-line to become a member. Our off-line members still receive our newsletter, are still matched with other parents, and are still involved in our off-line activities.

Stories & Pictures

I sent my child's story in, why isn't it up on the web site yet?

Stories are printed in our newsletter before they are published on our web site, otherwise there would be nothing "new" for our on-line members to read in our newsletter. Once your child's story is printed in our newsletter it will be published on the newsletter page of our web site. When the next newsletter is printed, your story will put on an individual story page.

Do I have to publish my contact information if I send in my story?

That is up to you. Unless you tell us not to publish your information, your name and e-mail will be published on-line and your name, e-mail, address, and phone number will be published in the printed version of our newsletter.

I sent my child's picture in, why isn't it up on the web site yet?

Due to time constraints, we update our web site about twice a month. Your child's picture will be added as soon as we update the site. If after 3 weeks you still do not see your child's picture, we did not receive it. You can also upload your child's photo yourself in our main albums and in your own personal album.

I sent my child's story and/or picture in, why isn't it in the newsletter?

We receive many stories and pictures for the newsletter. We try to fit in as many as we can, but very often we run out of space. When this happens, we add the stories sent in first and hold the rest for the next newsletter. All stories received will be printed.

Do you edit the stories?

We do not alter the stories content, but sometimes we have to cut back on the length of the story in order to fit it into the newsletter. To avoid this, please try to keep your child's story under 2 typed pages. We also sometimes correct typos and extreme grammatical errors and remove the names of hospitals or doctors criticized (to avoid liability) before the stories go to print.

How do I send in my child's story?

You can e-mail your story by typing it directly into an e-mail or attaching it as a document. You can also send it through postal mail. We ask that you please type the story (sometimes we have problems deciphering handwriting) and prefer to have it sent through e-mail to save us time on retyping.

How do I send in my child's picture?

You can e-mail your child's picture as a .gif, .jpg, .jpeg., or .bmp file or send it through regular mail. You can also upload your child's photo yourself in our main albums and in your own personal album.

Matching

Do I have to be matched with other parents?

Only if you want to. There is a space on the membership form that allows you to decline matching. Parent matching allows you to find families the most similar to your own.

Do I have to give out my phone number?

If you would like to release only certain information, it is as simple as writing that in your form- "please do not release my phone number or child's name".

What kind of information is given out for matching?

The information released for parent matching is your name, address, phone number, e-mail, your child's name, dates (birthday and memorial day), and a brief medical history (left-sided CDH, 3 repairs, heart defects, feeding problems, asthma, etc...). If you would like to release only certain information, it is as simple as writing that in your form- "please do not release my phone number or child's name".

Newsletters

How often are newsletters published?

The Silver Lining, our newsletter, is published quarterly. It is usually published in February, May, August, and November but sometimes we run a little late depending events and emergencies. Currently, we haven't been publishing newsletters due to lack of funds.

Why aren't I receiving newsletters?

If you didn't request to be on our mailing list when you filled out your membership form, or we didn't receive your membership form, then you were not put on our mailing list. Also, if you moved and didn't notify us of your new address, you were taken off of the mailing list. If you would like to be put on our mailing list, please e-mail us (you must be a member).

Donations

If I make a donation in honor/memory of a loved one, is it tax-deductible?

Yes, donations are tax-deductible because CHERUBS has 501(C)III status under the United States I.R.S.

If I make a donation in honor/memory of someone else's child/family member, will they know?

Families are notified of donations made in their child's/family member's name by a written acknowledgement sent through regular postal mail. However, they are not notified of the amount of the donation unless you would like them to know. If you would like to make a donation and are not sure if the family are members of CHERUBS, then please include their names and mailing address so that we can send them an acknowledgement.

Do I receive a receipt?

Yes, you will receive a receipt so that you can deduct your donation from your taxes.

Can I make a donation with my credit card?

For more information on credit card donations, please visit our donations page.

Where does my donation go?

All donations go to help us reach and inform families and medical professionals. Funds are used to pay for literature, newsletters, postage, office supplies, phone calls, and other expenses that allow us to send information and to counsel families. Donations can also be made for research- these donations will be put into an account until we raise enough money to hire researchers. No donations are used to pay employees (we are a volunteer-run organization). Currently, CHERUBS does not receive grant funding and our survival depends on donations and membership fees.

Copyrights

Can I use some of CHERUBS graphics on my web site?

Please do not use any of our graphics or logos for your web site or any for-profit purpose without express permission from CHERUBS. The graphics on our site were made exclusively for CHERUBS, however, you can "Adopt A Cherub" or use one of our banners to link to our web site. Sunset Web Design is donating graphic sets for parents to use on their personal tributes/memorials to their cherubs (members only).

Can I use some of CHERUBS graphics to make a shirt or decorate a bag or other object?

Yes, you can use the logos here to create t-shirts, bags, and other items for personal use only.

On-Line Services

What is a forum?

A forum is also known as a message board. You can post questions or respond to others. You must be a member to post to our forums.

Do I have to join in or can I just read?

We encourage you to join in, but you can just read the posts to see if you are the only one who feels certain emotions.

What is a chatroom?

A chatroom is a like an on-line support group meeting, except we type instead of "talk". Our chatroom is also known as our ShoutBox.

Why can't get into the chatroom?

You must be a member of CHERUBS to participate in our chatroom.

Is the chatroom always open?

Our chatroom is open 24 hours a day, 7 days a week. Although the chatroom is usually empty between chat meetings, you can always go into the chatroom with other parents during off-meeting times.

Can I go to all the chats?

For more information and our chat schedule, visit our calendar.

What is a listserv?

A listserv is an e-mail program on which you can send e-mails to a list of people and receive e-mails from that list. This is like a "24 hour chatroom". For more information on our listservs visit here. WE ARE CURRENTLY PHASING OUT OUR LISTSERVS and are using our member portal instead.

What is a webring?

A webring is a group of web sites with the same topic, whatever that topic may be. You can travel through all the sites in the webring just by clicking on the webring graphic. CHERUBS now has a webring for sites dealing with CDH. For more information, visit our webring page.

Volunteers

What do volunteers do?

CHERUBS is solely run by volunteers. For a list of what volunteers do, you can click here.

How many volunteers does CHERUBS have?

The number of volunteers that we have frequently changes, but we usually maintain a number of about 75 volunteers in dozens of positions and can always use more. Click here for a list of positions that need to be filled.

Can I help?

We always love new volunteers! If you would like to volunteer, you can read more about it here.

Our Web Site

Who maintains the web site?

Our web site was created by Sunset Web Design, a company owned and operated by our President, Dawn Torrence. Dawn updates our web site and creates all the graphics. If you have any problems with our site, you can e-mail Dawn.

Requesting Information

Can you send me some more information?

We can send you printed information, but all of the information in our information packet is available on-line on our downloads page. We encourage families to download and print the information off of our site in order to save on time and postage costs, but we are always happy to send information too.

Where can I find research information?

You can read many medical journal articles by visiting our research links page. You can also contact our Research Coordinator.

E-Mail

Why hasn't someone answered my e-mail yet?

We receive about 500 pieces of e-mail daily and try to answer them as soon as we can, but sometimes it does take us a while. If you need to be answered immediately, please call us or try our listserv. If you do not receive an answer in 2 weeks please make sure you sent it to the right address.

Who answers the e-mail?

We currently have only 1 full-time volunteer, our President, to answer all of our e-mail.

Phone Calls

Who answers the phone?

We currently have only 1 full-time volunteer, our President Dawn Torrence, to answer and return all phone calls.

What is a good time to call?

Since Dawn works another full-time job, it is best to call in the evenings on weekdays. Our phones are closed on weekends, except for emergencies.

Is there someone I can talk to late at night or if I can't get through on the main number?

We have parents on-call 24 hours a day to listen if you need to talk. For a list of on-call parents, visit here.

I left a message, when will my call be returned?

Most calls are returned within 3 days. If your call isn't returned by then, please call again. You may have forgotten to give your number, gave an incorrect number, or the machine cut you off.

Hospital/Doctor Referrals