CHERUBS National Children's Memorial Day Tribute

National Children's Memorial Day is December 14th. At 7:00 pm in each time zone, people will be lighting candles to remember all children lost.

Over 800 babies are lost to CDH in the United States alone. We remember all the families who mourn their children from Congenital Diaphragmatic and those who mourn their children lost from other circumstances.

Please take a moment to visit our site and scroll through the names of our cherubs with wings. http://www.cdhsupport.org

If you would like your cherub's name added or removed, please e-mail me at dawn.williamson@cherubs-cdh.org

CHERUBS 2009 Calendar

FINALLY, the calendar is up! Also, this weekend Cafepress has a free shipping sale going on!

http://www.cafepress.com/cherubs.337095355

Congenital Diaphragmatic Hernia Awareness Trademark

Update:

On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Diaphragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It was resubmitted without the logo and went onto the Supplemental registry on September 17, 2008. Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening correspondence to other CDH organizations and families who used the term “Congenital Diaphragmatic Hernia Awareness”.

On December 4, 2008, CHERUBS filed a Petition to Cancel with the United States Patent and Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”.

It is our goal, along with 7 other CDH organizations and over 4000 CDH families and medical care providers who signed an on-line petition, that this trademark be canceled so that all people affected by Congenital Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Diaphragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect. Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and persons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH families and to fight for their rights to raise awareness.

It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to cancel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organization for families affected by Congenital Diaphragmatic Hernia.

http://ttabvue.uspto.gov/ttabvue/ttabvue-92050284-CAN-1.pdf

http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2

Petition against the "Congenital Diaphragmatic Hernia Awareness" Trademark is located at http://www.ipetitions.com/petition/cdhawareness/index.html

CHERUBS Database Update - Attention all Members!

We need your help updating the database THIS WEEK! We are tabulating research results, sending out newsletters, and posting the National Children's Memorial Day tribute and we need your help to make sure the database is up to date.

For All Members:

Instructions on how to add / fix your cherub's listing on the calendar and how to update your profile can be found at: http://www.cdhsupport.org/members/viewtopic.php?p=36192#36192

For Grieving Members:

On Friday we will change our site for National Children's Memorial Day. We will list all cherubs lost on the homepage until December 14th. The list will come from our database. If you do not see your cherub listed on the calendar (shown on every page of our forums), then they will not be included. You must follow the instructions below to add your cherub. Please make sure that their angelversary is also listed in your profile or the database will not recognize that they have passed away.

Please do not send me a message or an e-mail to include your cherub before the 14th. Or a facebook or myspace note. I really can't keep up, I'm sorry. Using our database on our site is the only way we can do this without mass chaos with a list of 1000 cherubs with wings. We really want to include everyone and not leave anyone out. I would feel horrible if a cherub wasn't listed so please, please take a few minutes to double-check to make sure your cherub is included if you are a grieving parent.

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If you're having any trouble logging on to the site, the following are administrators for the site and can help you get logged in:

Stephanie - solivarez@cherubs-cdh.org
Barb - bwagner@cherubs-cdh.org
Danielle - dkessner@cherubs-cdh.org
Corin - cnava@cherubs-cdh.org
Tara - thall@cherubs-cdh.org
Dawn - dawn.williamson@cherubs-cdh.org

Please do try to update the calendar yourself first before you ask for help, as we are completely swamped right now. But know we are here if you need help!

Do Unto Others....

"Do unto others as you would have them do unto you" - God

"Do unto others as you would have them do unto you" - so simple and so hard to do for some. If you want people to be kind to you - be kind to them. If you want people to like you - like them. If you don't want people to attack you - don't attack them. If you don't want people to prevent you from doing things - don't prevent them. If you don't want to be hit - don't strike at others. If you want people to share with you - share with them. If you want to be respected - respect others. These are all things most of us learn on the playground.

The Golden Rule.... what most Christians are supposed to live by. What most major religions also teach. It's so simple. Treat others how you would wish to be treated.

We believe that at CHERUBS and we try to live that. We work hard to try to "do unto others" as we wish others had done for us. This is so important in dealing with CDH.

CDH families need kindness - loving family and friends who are there for them in their darkest hours. Praying for them. Praying beside them. Giving them hope and encouraging miracles. Is that not how we would all wish to be treated during a time when we aren't sure if our baby will survive a cruel and devastating birth defect. People can say the cruelest things sometimes. Thoughtless words can hurt. CDH families need kindness. We all do.

CDH families need a helping hand - this can be physically, monetarily or through prayer. CDH can drain a family, emotionally and financially. Hopefully our healthcare system will find a way soon to provide free medical care to families - a lot of families will have to file bankruptcy or go on government healthcare to afford to pay their bills after CDH. Even if the healthcare is covered by insurance, losing time from work, travel expenses and incidentals can add up quickly. Bring them a meal to the hospital and save them the expenses of cafeteria food. Pay for parking passes - they add up quickly. Cover the cost of their Ronald McDonald House room - cheaper and more supportive of a hotel room. Hand them a gas card. Give them a card with cash to help them out. Offer to watch their other children or do something fun with them. Clean their home or do their grocery shopping. Help cover all the household duties and chores that have to be pushed to the side when dealing with CDH. You have no idea how 1 kind act can go so far - and isn't that how you would want to be treated?

CDH families need compassion - support in raising a special child or grieving their cherub. Be understanding when they can't take their child out in public for fear of germs. Don't get upset if they have a hard time being around pregnant women for a while. Call them to check on them. Learn about CDH. CDH families need to know you care. For those grieving families, know the cherub's birthday and heaven day and be supportive on those days. Visit the cemetery with them. Do things in memory of the cherub. It's so important for grieving families to know that other people remember their cherubs too. Isn't this how you would want people to be if you were in their shoes?

We have been giving this advice to family and friends for years. We've been printing lists of what you can do to help CDH families in our Parent Reference Guide since 1997. We get lots of e-mails and calls from grandparents or friends or fellow church members or co-workers all asking "what can we do?". We give them the lists but we also tell them "Treat them how you would want to be treated if you were in their shoes".

That's not just a quote at CHERUBS - it's what we live by and work by. It's what every CDH family needs.

CHERUBS - Congenital Diaphragmatic Hernia Organization

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

www.cdhsupport.org

Here at CHERUBS, we wear many, many hats.

Our first priority are CDH families and they deserve accurate information so that they can make the best decisions for their cherubs. We first published our Parent Reference Guide in 1996, giving parents a list of commonly used medical terminology and what it all means in layman's terms. Advice from other parents on pumping breast milk or planning a funeral. Songs to play for a baby in the NICU. Information from recent CDH studies. Diagrams of CDH. Correct CDH statistics. An article about CDH written specificially for CHERUBS by a well-respected pediatric surgeon, our Vice-President Lesli Taylor, MD. We make sure that they know infection and pneumonia cost more cherubs' lives than poor lung function. All of these things for them. Not to sensationalize CDH or gain attention for CHERUBS. But correct information for CDH families.

We give information and support to families. Offering support services since 1995. We created the world's first CDH web site, chat room, listserv, forums, blogs, newsletter and conference. Families are no longer alone dealing with CDH since 1995. We are proud of the fact that because our group has been so successful, several other CDH groups have spawned from our membership and follow in CHERUBS footsteps. There can never be too much support for CDH families!

Not only do we support CDH families, but we also support other CDH organizations. We have worked with En Stitching Hernia Diafragmatica, Holland's CDH group, for 10 years. Onno has attended one of our conferences and we enjoyed spending several days with him, hanging out and exploring Disney World after conference hours. CHERUBS Australia and CHERUBS UK now have non-profit status in their respective countries - with our blessing and the sharing of our knowledge. We work with the French and Italian CDH groups. We are strong supporters of Kays Kids, Rainbow of Hope, the Olivia Raine Foundation, Jack Ryan Gillham Foundation and Little Lambs. We worked with many of these organizations to collectively look out for CDH families best interests and fight the Congenital Diaphragmatic Hernia Awareness Trademark so that all CDH families can continue to raise awareness without fear. CHERUBS is very, very proud to be a member of the Alliance of Congenital Diaphragmatic Hernia Organizations which not only includes many CDH support groups but top CDH hospitals and researchers as well - all of us working together to help CDH families.

Our second priority has always been advocacy and awareness and this is reflected in our interviews in over 100 newspaper articles, interviews for television shows such as 20/20, interviews for magazines such as Family Circle and Women's Day. It is in the events that we have held for the past 15 years, teaching the public about CDH. Rallies and bake sales. Bowl-a-thons and ATV events. Formal balls and golf tournaments. Balloon releases and candle lighting ceremonies. In the 1000's of web sites that link to CHERUBS and CDH info. In the 1000's of awareness items we have been offering on our web site since 1997. We advocate for awareness every single day.

In 1997, CHERUBS compiled our first Congenital Diaphragmatic Hernia Research Survey, taking data from parent membership forms and compiling studies. We did this all painstakingly by hand every year until 2000 - when our membership numbers grew so big that we didn't have the time or the manpower to put together another survey by hand. Our studies were ordered by surgeons and researchers around the world and we have collaborated with several on their own studies. Our results have been submitted for publication to medical journals, co-signed by some of the world's top CDH surgeons. http://cdhsupport.org/members/dload.php?action=category&cat_id=3

We take our research very seriously and do not submit haphazard statistics or information to parents without checking with medical advisors first. We do our research the hard way - in the research library, talking to researchers, spending weeks going over every number before we release it to the members and public. We do not talk abstractly of CDH research, we do not write articles about the work of others found on the internet, we do not donate $100 to a hospital and call ourselves a research organization. We do actual research. We actually contribute to the CDH research community and have done so since 1997. It has not been easy and we have lost many a sleepless night tabulating data or pouring over medical journals - but our goal has always been to help lead the way to find the cause, prevention and better treatment of CDH.

Now, we are compiling the 2008 Congenital Diaphragmatic Hernia Research Survey Results with the data of over 2500 CDH families. The CDH Study Group now holds the world's largest database of research information on the diagnosis and immediate medical care of CDH babies. CHERUBS holds the world's largest database of research information on the family history, neonatal care and long-term outcome of CDH babies. We have always worked together and continue to do so with several projects in the works. Our CDH Research site is under construction and will be ready by Spring, 2009. It will compile CDH research data on the fly and will be available freely to all CDH researchers, families and organizations.

And all this is not easy. CHERUBS was started by 2 CDH parents with no experience but we gained non-profit status within 8 months. We started before there was an internet and without help. We paid our dues and did the hard work and we are so proud of all we have accomplished!

CHERUBS is a charity and is run as such. It puts our cause first - helping CDH parents. We do not look at our organization in the business sense. Charities give. Businesses sell. We do not feel a need for competition or making calculated business plans to make the most money or own the rights to anything. We are not selling anything. We are giving away CDH information freely, raising awareness and offering support. Our "business" plan is created by following our hearts and consciences, not our bank account. This makes it sometimes hard to provide all the services that we would like to give - but in the long run it is what has made us successful in helping 1000's CDH families and what makes our membership a family.

CHERUBS is still run solely by volunteers. Dawn, our President, volunteers over 40 hours every week to helping CDH families through CHERUBS - while also having a family and running a business and going back to college for medical courses. Our Advisors dedicate a minimum of 20 hours each every week as well, with several also donating over 40 hours of our time weekly. We have an extensive web site with 1000's of pages, forums, services and 24 / 7 support to families. We have blogs to maintain, Facebook, Myspace, and many other sites we keep updated with CHERUBS and CDH news. Newsletters and research to work on, awareness events year-round, fundraisers, books and more committees than most support groups. We have get-togethers and conferences. We maintain a huge e-commerce shop offering 1000's of CDH awareness items - all original and designed by hand by us. We also have our accounting, IRS paperwork, state paperwork and legal paperwork. All meticulously done and when we are short on funds and donations - often Dawn or one of the Advisors will personally pick up the tab to make sure that CHERUBS can continue to offer a needed service.

There is dedication and heart in CHERUBS. Everything we do, we do to help families and the CDH community as a whole. We do this with honesty, integrity and honor, making our cherubs proud. We are 1 big CDH family and we offer positive and comforting support to each other. Our focus is, and always has been, helping CDH babies and families.

We wear many, many hats at CHERUBS. And they all look fabulous! :)

How well do you know the facts about Congenital Diaphragmatic Hernia?

How well do you know the facts about Congenital Diaphragmatic Hernia?


1.
What does CDH stand for?
* Cat Dog Horse
* Congenital Diaphragmatic Hernia
* Congenital Diaphragmatic Hernia

2.
What is CDH?
* A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.
* A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.
* A medical disease

3.
What is the survival rate for CDH?
* 50% - 60%
* 25%
* 70%

4.
Which is more common, Left-sided CDH or Right-sided CDH?
* Left-Sided
* Neither
* Right-Sided

5.
What organs are / can be herniated in CDH?
* Diaphragm, Lungs, Stomach, Liver, Intestines, Spleen, and more
* Any organ in the body
* Diaphragm, Lungs, Stomach
6.
What are the odds of a baby having CDH?
* 1 in 2000
* 1 in 5000
* 1 in 2500

7.
What complication is most lethal to CDH babies?
* Small Lungs
* Infection & Pneumonia
* Poor Lung Function

8.
Approximately how many babies are born with CDH every year in the U.S.?
* 500
* 1600
* 1000

9.
Approximately how often is a CDH baby born in the world?
* Every day
* Every hour
* Every 10 minutes

10.
Which is NOT a form of CDH?
* Morgani
* Reynaldi
* Bochdalek

11.
Which gender has a slightly higher survival rate of CDH?
* Female
* Male
* Neither

12.
When was CDH first described in medical books?
* 1575
* 1887
* 1903

13.
In what year was the first successful CDH repair on an infant?
* 1946
* 1893
* 1973

14.
In what year was ECMO (Extracorporeal Membrane Oxygenation) first used on a CDH patient?
* 1988
* 1976
* 1991

15.
In what year was the world's first CDH Research Group (The CDH Stud Group) and the world's first CDH Support Group (CHERUBS) both founded?
* 1995
* 1999
* 2002

16.
What causes Congenital Diaphragmatic Hernia in babies?
* No one yet knows.
* Pesticide exposure during pregnancy.
* Drug exposure during pregnancy.

17.
Which of these complications are most common with many CDH survivors?
* Pulmonary Hypertension, Allergies, Feeding Issues
* Pneumonia, Allergies, Asthma, Developmental Delay
* Pneumonia, Pulmonary Hypertension, Allergies, Asthma, Feeding Issues, Developmental Delay

18.
Can you tell what a CDH survivor looks like if you saw one in public?
* They have a funny look to them
* They look like everyone else.
* Only if they had their shirt off and you saw a scar.

19.
Which one of these procedures is more common than the other 2 in 2008 for these children?
* Trachel Occlusion
* Tracheal Ligation
* In Utero Repair

20.
What does ACDHO stand for?
* Alliance of Congenital Diaphragmatic Hernia Organizations
* American Congenital Diaphragmatic Hernia Organization
* American Congenital Diaphragmatic Hernia Office


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Answers Below (don't cheat!):









1. What does CDH stand for?
Congenital Diaphragmatic Hernia

2. What is CDH?
A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.

3. What is the survival rate for CDH?
50 - 60%

4. Which is more common, Left-sided CDH or Right-sided CDH?
Left-Sided CDH

5. What organs are / can be herniated in CDH?
Diaphragm, Lungs, Stomach, Liver, Intestines, Spleen, and more

6. What are the odds of a baby having CDH?
1 in 2500

7. What complication is most lethal to CDH babies?
Infections & Pneumonia

8. Approximately how many babies are born with CDH every year in the U.S.?
1600

9. Approximately how often is a CDH baby born in the world?
Every 10 minutes

10. Which is NOT a form of CDH?
Reynaldi

11. Which gender has a slightly higher survival rate of CDH?
Female

12. When was CDH first described in medical books?
1575

13. In what year was the first successful CDH repair on an infant?
1946

14. In what year was ECMO (Extracorporeal Membrane Oxygenation) first used on a CDH patient?
1976

15. In what year was the world's first CDH Research Group (The CDH Study Group) and the world's first CDH Support Group (CHERUBS) both founded?
1995

16. What causes Congenital Diaphragmatic Hernia in babies?
No one yet knows.

17. Which of these complications are most common with many CDH survivors?
Pneumonia, Pulmonary Hypertension, Allergies, Asthma, Feeding Issues, Developmental Delay

18. Can you tell what a CDH survivor looks like if you saw one in public?
Only if they had their shirt off and you saw a scar.

19. Which one of these procedures is more common than the other 2 in 2008 for these children?
Trachel Occlusion

20. What does ACDHO stand for?
Alliance of Congenital Diaphragmatic Hernia Organizations

Donate to CHERUBS for free just by shopping in over 700 stores through goodshop.com!

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You can shop on Amazon, Target, Sears, Wal-Mart, ToysRUs, and over 700 other stores just like you normally would, but the stores will donate a percentage of your shopping total to CHERUBS. It does not cost you a penny. If you're going to shop on-line for the holidays, why not give to a great cause at the same time! :)

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(Press release by Goodsearch.com, with CHERUBS name)

As you know, CHERUBS is a non-profit organization and as you can imagine nonprofits and schools are facing a fundraising crisis this year.

The good news is that more than 700 of the top Internet retailers and travel sites including Amazon, eBay, Target, Apple, Expedia and more have joined forces with GoodShop.com to donate part of every purchase to your favorite charity or school at no additional cost to you (more than 64,000 nonprofits are now on-board)!

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Please tell 10 friends about GoodShop and GoodSearch today. They've been featured in the NY Times, the Wall Street Journal, CNN, Oprah Magazine and more.

Charities need our help to spread the word now more than ever!

International Congenital Diaphragmatic Hernia Conferences

The locations of our next 2 International Congenital Diaphragmatic Hernia Conferences have been chosen!

July, 2009 - Texas! Town and exact date not yet decided.

July, 2010 - San Francisco, California! Exact date not yet decided.


More details will be posted in the coming months!

Alliance of Congenital Diaphragmatic Hernia Organizations

CHERUBS is extremely proud to be a member of ACDHO (Alliance of Congenital Diaphragmatic Hernia Organizations), CDH organizations and foundations working together to help families affected by Congenital Diaphragmatic Hernia.