Sunday, November 30, 2008

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.

Wednesday, November 26, 2008

CHERUBS State & International Representatives

CHERUBS is an international organization with over 2600 members in all 50 states and in 38 countries. We are so proud of our wonderful Representatives who are helping our global CDH support group to also be a local CDH support group as well.

Our Reps provide local support to families dealing with Congenital Diaphragmatic Hernia. They plan local get-togethers, picnics and other events. They provide hospitals with information packets for CDH families. They help families find other local services if they are in need of additional help. They represent CHERUBS at conferences and awareness events and often plan these events as well. They help plan our International CDH Conferences. Many of our Reps have created blogs and web sites to offer local on-line support.

2 of our Representatives have gone on to achieve non-profit status in their own countries which makes them sister organizations to CHERUBS now. Congratulations to our CHERUBS Australia and CHERUBS UK members for this wonderful achievement! We are very, very proud of them!

Click on the Country / State to view their blog or web site - some are still under construction. Click on the Rep's names to e-mail them.

Australia - President ~ Danielle Kessner ~ 03 5135 6999
Australia ~ Angela Logozzo ~ 02 47740470
Australia ~ Sharon Knott ~ 08 9304 2583
Canada ~ Kim Switzer ~ 204-687-8995
Great Britain ~ Brenda Lane ~ 01553 762 884
Great Britain ~ Kevin Lane ~ 01553 762 884
Great Britain ~ Rachel Wyatt ~ 01908 565 574
India ~ Shankari Murali ~ +91-80-25283423
Ireland ~ Liz Dunne ~
Mexico ~ Fernanda Arce ~ 55249924
New Zealand ~ Tania Smythe ~ 03 4727321
New Zealand ~ Sonia Stuart ~ 09-4353070
Papau New Guinea ~ Danielle Kessner ~ 03 5135 6999
Scotland ~ Marie Brown ~ 01389 380120

Arizona ~ Krista Bold ~ 480-882-9449
California ~ Tammy Spohr ~ 530-273-2156
Colorado ~ Tracy Meats ~ 307-362-9630
Connecticut ~ Corin Nava ~ 401-524-9182
Connecticut ~ Jeanne Nava ~ 401-578-8279
Indiana ~ Stephanie Olivarez ~ 574-224-2223
Iowa ~ Sarah Godsey ~ 208-755-7772
Louisiana ~ Ashley Jackson ~ 225-271-4096
Maine ~ Jeanne Nava ~ 401-578-8279
Maine ~ Corin Nava ~ 401-524-9182
Maryland ~ Brenda Slavin ~ 443-624-2187
Massachusetts ~ Jeanne Nava ~ 401-578-8279
Massachusetts ~ Corin Nava ~ 401-524-9182
Massachusetts ~ Joelene Ross ~ 508-904-1503
Minnesota ~ Melissa Glennie ~ 952-240-3451
Montana ~ Elaine Moats ~ 406-234-5038
New Hampshire ~ Jeanne Nava ~ 401-578-8279
New Hampshire ~ Corin Nava ~ 401-524-9182
New Jersey ~ Jeanne Nava ~ 401-578-8279
New Jersey ~ Corin Nava ~ 401-524-9182
New York ~ Jeanne Nava ~ 401-578-8279
New York ~ Corin Nava ~ 401-524-9182
North Carolina ~ Dawn Williamson ~ 919-610-0129
North Dakota ~ Elaine Moats ~ 406-234-5038
Ohio ~ Sarah Deskins ~ 419-512-3446
Ohio ~ Tara Hall ~ 614-275-0858
Pennsylvania ~ Kate Crawford ~ 412-414-7073
Pennsylvania ~ Andrea Ryan ~ 610-927-9356
Rhode Island ~ Corin Nava ~ 401-524-9182
Rhode Island ~ Jeanne Nava ~ 401-578-8279
South Carolina ~ Lynne Brogdon ~ 864-627-8644
South Dakota ~ Elaine Moats ~ 406-234-5038
Texas ~ Melissa Kelly ~ 361-288-4698
Utah ~ Kimberly Byington ~ 801-814-1514
Vermont ~ Jeanne Nava ~ 401-578-8279
Vermont ~ Corin Nava ~ 401-524-9182
Virginia ~ Penny Campsey ~ 434-432-2166
Washington ~ Georgia Gebow ~ 360-691-5974
Washington DC ~ Brenda Slavin ~ 443-624-2187
Wyoming ~ Tracy Meats ~ 307-362-9630

We still need Reps in many countries and states. If you are a member of CHERUBS and would like to volunteer to be a State or International Representative, please contact Stephanie at solivarez@cherubs-cdh.org

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! :)

Tuesday, November 25, 2008

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


--------------------------------------------------------------------------------------------


























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

Saturday, November 22, 2008

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

If you shop on-line, please consider shopping through Goodsearch.com for CHERUBS.

Just go to http://www.goodshop.com/?charityid=856932

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! :)


GoodSearch: You Search...We Give!

------------------------------------------------------------

(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)!

It takes just a few seconds to go to www.goodshop.com, select your charity, and then click through to your favorite store and shop as usual.

Also, Yahoo has teamed up with GoodShop's sister site, GoodSearch.com, to donate a penny to your cause every time you search the web. This is totally free as the money comes from advertisers.

To give you a sense of how the money can add up, the ASPCA has already earned more than $17,000!

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!

Friday, November 21, 2008

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.

Over .5 Million Babies born with Congenital Diaphragmatic Hernia Since 2000





If you like the CDH stat counter to the left, you can pick up the blogger / blogspot code at http://www.cdhsupport.org/graphics/cdhstatcounter-blogger.txt

HTML code can be downloaded at
http://www.cdhsupport.org/graphics/cdhstatcounter-html.txt

We're still working on coding for Facebook, Myspace, Live pages and Wordpress. If you want to help on that code, please let us know!



In the United States:


There are approximately 6 million pregnancies every year throughout the United States:

* 4,058,000 live births
* 1,995,840 pregnancy losses

1 in 2500 babies is diagnosed with CDH. That means over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States Alone.

With a 50% survival rate, 800 of those babies will die.

Today, and every day, at least 4 families will be devastated with the news of CDH.



Worldwide:

The World Census Bureau estimates that in 2008
over 350,000 babies are born in the world every day = 147 babies will be born with CDH every day.

According to the IDB (International Database) from the U.S. Census site, 257 people are born every minute globally. That means that somewhere in the world, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Every 10 minutes.

1 CDH baby every 10 minutes.

These numbers add up to over a
half million CDH babies since January 1, 2000!

No one knows the cause of CDH.

No one knows how to prevent CDH.

Hardly anyone knows what CDH is unless someone you love has been affected by it.

CHERUBS and the CDH Study Group are the only 2 organizations actively researching Congenital Diaphragmatic Hernia on a global platform. CHERUBS is the only organization offering global support to families of children born with CDH, with members in 38 countries.


What can you do to help?

Raise awareness. http://www.cdhsupport.org/awareness, http://www.cafepress.com/cherubs, http://www.zazzle.com/cherubs

Donate to research. http://www.cdhresearch.org

Participate in events. http://www.cdhsupport.org/members/viewforum.php?f=184

Help support CDH families. http://www.cdhsupport.org



References:

http://www.americanpregnancy.org/main/statistics.html
http://www.worldpopulationbalance.org/pop/metronome.php
http://www.census.gov/ipc/www/idb/

Wednesday, November 19, 2008

National Children's Memorial Day - December 14, 2008



Every year since 1997 CHERUBS members have participated in National Children's Memorial Day. This was started by Compassionate Friends in remembrance of all children lost. This includes children of all ages, including those not yet born, and includes children lost from all diseases, birth defects, accidents, murders, suicides - ALL children. Because we have several cherubs who were lost over 1 yr old, the Pregnancy and Infant Loss Day didn't encompass all of our cherubs - National Children's Memorial Day does. It also allow grieving parents to meet with other local grieving parents in their areas. This event occurs every year on the 2nd Sunday of December and proclamations by the Senate and President are signed. Proclamations are also signed by other heads of state around the world.

Each year, most of our grieving families light candles at 7:00 pm - with each time zone this creates a continuous light around the world for 24 hours. Many of us light candles for our cherubs and for other cherubs as well. I invite ALL members to participate this year. This includes those of you who still have your cherubs - please light a candle for those cherubs lost, in honor of your miracle and blessing of still having your cherub here.

Some of you may know, I have had many miscarriages. I light candles for those babies as well and light candles for many cherubs. I started doing this in 1997 and in 1999 I had to add a candle for Shane. That first year his candle (a tealight) caught my coffee table on fire. 20-something candles on the table for my babies and many cherubs and his somehow got the polyurethane so hot that it burnt a hole in my antique table. I still used that table until last month when I got married and didn't have room for it - I smiled every time I saw that burn mark - like Shane was sending me a sign that he was there. Because the 2 years before, he had been, watching the flames on the candles as his dad and I said prayers for the children lost. And saying prayers for how thankful we were to have him still here. This is why I ask of all you to participate - in joy for our cherubs still here and in memory for those who are not.

Some other things we can do to also raise awareness.... wear CDH Awareness clothing. It doesn't matter what group it's from, what color the ribbon is... just raise awareness. Our Texas members had group candle lighting ceremonies for 2 years. I help a group candle lighting in NC for all local grieving parents (not just CDH) one year. Churches will often include information in their services and programs if you ask. Many churches will let you hold candle lighting ceremonies as well. During the day you could organize a balloon release with the children's names on the balloons (florists will often donate them). Local newspapers usually welcome stories on NCMD and the events held locally. This is a great way to raise awareness of NCMD and CDH. Or you can just gather your family in your home and light candles and say prayers at 7:00.

The week before NCMD, our site will change to black and white and there will be a listing of all the 100's of babies lost to CDH on our homepage, with a candle by each of their names (make sure you check the box to give publishing permission on your Profile so your cherub is included if your cherub has wings). This will stay up for 1 week and it will be a very solemn reminder of just how many cherubs are lost - scrolling and scrolling through a list of names of victims to CDH is heartbreaking when you think of all the families of all these children. We do this out of respect for our grieving families, those who will not get to buy toys for their cherubs this Christmas or watch them build snowmen or celebrate New Year's.

The point of all we are doing for NCMD, of all of this, is let us all participate this year and remember why we are all here - to help CDH families and to try to stop the loss of more babies to CDH.

If you would like to hold a local event, please let us know.

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



Saturday, November 15, 2008

Stories of Cherubs Vol. II, Cooking With Cherubs Vol. III & MORE!

I FINALLY finished all these projects, woohoo! A HUGE thank you to our amazing volunteers who collected over 250 recipes!! And an emormous thank you to the parents who wrote and submitted stories of their children affected by CDH.


"Stories of Cherubs" Volume II
http://www.cafepress.com/cherubs.329390564
More stories of families affected by Congenital Diaphragmatic Hernia



"Cooking With Cherubs" Volume III
http://www.cafepress.com/cherubs.329390565
250 delicious recipes from our members, family and friends





CDH Skateboards
http://www.zazzle.com/cherubs
Send us your designs!



And a few more new graphics to help raise awareness and research of Congenital Diaphragmatic Hernia!




Check out the new CDH Research Flip Camera!


Coming soon: CDH Awareness Flip Cameras, Shoes, Neckties, 2009 Calendar and more!

Monday, November 10, 2008

Photos of Cherubs - Pictures of over 500 children born with CDH





If you haven't taken a look at our on-line photograph albums, they are worth the visit. We have over 2500 CDH families at CHERUBS and over 500 of them have uploaded their children's photographs. These pictures are a good representation of all the faces of Congenital Diaphragmatic Hernia and how completely "normal" these kids look.... you could very well pass a cherub on the street and never know it.

Cherubs Without Wings Album (Survivors) - http://www.cdhsupport.org/members/album_cat.php?cat_id=2

Cherubs With Wings Album (Non-Survivors) - http://www.cdhsupport.org/members/album_cat.php?cat_id=3

If you would like to include your cherub's photo, please log on to our site and add your picture to the appropriate album. Our 2008 Cherubs Yearbook will be put together soon and our 2009 CDH Cherubs Calendar will be ready by next week so make sure to add your photo by Wednesday to be included!



"Stories of Cherubs" book

"Stories of Cherubs" Vol. II will be out this weekend! Last minute submissions are being accepted until Wednesday. If you aren't sure if your story will be included, you can check over on our forums for the list of stories that we have received. http://www.cdhsupport.org/members/viewtopic.php?p=34480#34480




Below is a list of the stories that were included in "Stories of Cherubs" Vol. I, which is still on sale at cafepress! http://www.cafepress.com/cherubs.91971767

Aileen Iris Adame
Ashley Kaitlyn Abel
Logan Andrew Alexander
Gauge Michael Allen
Cloudey Rae Anders
David Valera Angil
Faith Marie Atkins
Nathan Presley Bacon
Joshua Bruce Baker
Nathan Balistreri
Chloe Gabrielle Barbee
Jack Barkley
Angela Barricklow
Joshua Bazian
Dominick Aaron Beach
Spencer James Bean
Chella Jane Bell
Kaylee Lynn Bentz
Jaila Berrios
Caitlin L. Blair
Joel Archie Jed Abel Blakley
James Zachary Blaylock
Kailyn Brooke Bost
Amanda Bracher
Madeline Hope Bracken
Alyssa Nicole Bradshaw
Tara'mais J. L. Brown
Anneliese Mae Browning
Tyler Bruce
Nicholas Michael Brucher
Patrick Neil Bryant
Becky Buist
Ian Raymond Bunch
Michelle Button
Corkins Cadence Skyer
Nicholas Calandro
Brady Joseph Campbell
Tyrell James Campbell
James Chalk
Matthew Cheffer
Richard Cheslock
Elizia Chicoine
Kayla Mae Michele Childress
Alisha Lemuela Chiteme
Emily Nicole Clark
Jamie Clarke
Nathan Theo Clarke
Matthew Clemens
Trinity Ann Coleman
Daniel Collett-Arquelles
Peter Compa
Tyler Conry
Troy Coon
Taylor Saige Cooper
Finn Soloman Cowan
Dallas Cox
Angelia Crawford
Carly Cribben
Dylan Crisorio-Rivera
Jacob Michael Crowley
Abigail Faith Curtis
Hope Dangerfield
Tristan Dean
Brian Decker
Sara DeHart
Noelle Deneault
Kelly Dickerson Wright
Sydney DiMaria
Bryan Shawn Doan
Jesse James Drugmand
Adrienne Dale Dumas
Amanda Leigh Durbin
Jeffery Ronald Durrigan
Joshua Liam Siddhattha Eck
Cody Edwards
Cole Benton Edwards
Reese Gabrielle Eisele-Elizondo
Shelton Earl Evans
Emma Fahey
Joey Falasca
Henry James Faure
Tysen Rick Fausett
Sean Feaster
Tyler Anthony Finley
McKynna Lorraine Fisher
Benjamin Fleming
Michael Christian Fogelgren
Candis Nakole Forman
Sean Patrick Forney
Dylan Richard Forsythe
Thomas Alexander Frietag
Anna Fuss
Emma Elizabeth Gallagher
Christopher Michael Garner II
Steven Tyler Gartman
Hayley Chantelle Ginns
Matthew Goembel
Nadia Gould
Kirra Graham
Kaleb Matthew Groce
Tyler Grubb
Aimee & Cameron Bellas Haas
Shana Kay Hagood
Joseph Michael Hales
Brandon James Hall
John Michael Hall
Taylor-Lynn Faith Halter
Zarek Ryan Halterman
Colin Raymond Hambel
Coleman Allen Hamilton
Blake Hanlon
Zachary Keith Harris
Sarah Harrison
Sean Allen Heiting
Jacob Nelson Henze
Rebecca Breana Higgins
Molly & Megan Hirst
Jack Hockenyos
Karson Hocker
Rebecca Christine Hodson
Aaron Jacob Hoewing
Tierney Elizabeth Hohman
Brian Holsworth
Hannah Elizabeth Horn
Mattson Edward Houghton
Samantha Marie Hudson
Elizabeth Joy Huffman
Belle Kathleen Hutto
Anthony Urban Iacobucci
Joshua Evan Interiano
Isaac Jackson
Bradley James Makanaokalani Jacobs
Hayley Jarrett
Derek Jarvis
Bethany Michelle Jenkins
Gregory Joseph Jennings
Alexandria Katelyn Job
Matthew Ryan Johnson
Joseph Mackenzie Kelley
Joshua Kelly
Lewis Kelly
Madison Elizabeth Kelsay
Cameron Anthony Kennell
Alyssa Catherine Kessner
Samuel Kincade
Ariana Kjaersgaard
Clara Knapton
William James Kowalski
Sara Hope Lamkin
Jessica Lander
Brittney Landry
Alysha Rhiannon Lane
Charley Langford
Mathias Jacob Lehmann
Cody Michael Ragland Lenhart
Darragh Lennon
Sarah Christina Lewis
Aidan Gustavo Liebe
Jane Elin Lockhart
Joe Longman
Danny Lord
Natalie Lund
Sean Matthew Lutz
Cody Albert John Maerten
Blake Massie
Sydney Olivia Matthews
Jacob Aaron Matulevich
Madeline Adell May
Caleb McAndrew
Joshua Cameron McCarty
Fallon Jessica McClelland
Lily Grace McDonald
Connor Ellis McLuckie
Fletcher David McNeil
Margret Faith McSwain
Blake John Merrick
Abigail Metty
Ashley Meyers
Melissa Michalski
Alexyss Jean-Elizabeth Miller
Megan Renee Miller
Kristin Marie Moats
Oscar Moffet
Preston Carr Montague
Avery Michelle Morgan
Kevin Russell Morgan Jr.
Jodi Marie Morrison
Spencer Andrew Morton
Brandon Motley
Alex Mourtsen
Ryan Matthew Mudderman
Owen Mulak-MacPhee
Michaela Munson
Anugrah Murali
Connor Alexander Myers
Naomi Nagurski
Benjamin Liam Newby
Luke Nowakowski
Ashley Nugent
Clare O'Connor
Jonathan O'Malley
Tyler James Oosterhoff
Emily Frances O'Reilly
Riley Tucker Padgett
Caden Andrew Parker
Jak Parsons
Isaac Conner Pedler
Matthew Ryan Peterson
Jonah Michael Phares
Anna K. Piasecki
Rex Piner
Aiden Plaisted
Dante Polito
Max Robert Porter
Sydney Price
Cole Robert Pulse
Jacob Pulse
Benjamin Michael Pytyck
Jonathan Luke Rademaker
Angela Reedell
Candace Reeves
Rebecca Jade Reid
Dominic Joseph Reitz
Samuel Lee Retterer
Caleb Michael Rhodes
Andrew Christian Riley
Brianna Mary Roberts
Logan James Roberts
Rhian Robilliard
Ian Riley Robinson
Wesley Alexander Robinson-Derrick
Christopher William Rodriguez
Hailey Elizabeth Rogula
Brayden William Ross
Brook Sue Rupe
Abby Elizabeth Russell
Bennett Rezsö Russell
Madeline Jo Rutheford
Juan Heinrick Sampedro
Collins Sarah Violet
Thomas Sawyer
Colton Saylor
Briana Schafer
Harlee James Scherrenberg Timms
Eric Christopher Schmitt
Madison Lillian Schultz
Hope Natasha Scott
Maresa Serra
Parker Daniel Setliff
Luke Stephen Shooter
Harry Simpson
Trent Montgomery Sincavage
Amanda Brianne Slavin
Nicholas Brian Slavin
Cherylynn Renee' Smith
Mathew Smith
Rhiannon Lea Smith
Richard Carl Snow
Laura Beth Snyder
Jaret Paul Spelich
Aaron Spencer
Makenzee Spencer
Casey Richard Starks
Connor Ryan Stevenson
Kaylyn Stiner
Karina Strong
Haley Elizabeth Sum
Emily Ruth Surgis
Alisha Faith Swartz
Cadwell Tanina
Mersayd Margaret Taylor
Jaqueline Taylor-Jackson
Garreth Mervy Thomas
John Lee Thompson
Ryan Treasure Thompson
Stephanie Ann Thompson
Anna Tijan
Jeremy Shane Torrence
Christopher Michael Toth
Jessica Mary Tucker
Ryan Michael VanderSchaaf
Quinn Michael Verdin
Alexander Lee Vise
Bailey Cameron Viset
Lisa Warnock
Zachary Wasik
Cameron Dianne Watson
Callum Weber
Joshua Weber
Brandon Weborg
Shae Ashley Webster
Allison Brooke Weldon
Emma Margaret West
Kara Westover
Sherry Wheeler Wheeler-Macormic
Natalie Dianne Whittle
Samuel Austin Wiggs
Ashton Lee Williams
Nathan Hunter Wilson
Corey Woodring
Max Wyatt
Katie Elizabeth Yerger
Janessa Opal Margaret Young
Avery Mae Ziebert
Aagje, Babette and Suze Zwart

CDH Support and Friendship at CHERUBS

One of our Advisors made a great observation this week. She said that one thing she's learned in this CDH journey is that you will always come across a few people who believe that they have been victimized more by CDH than anyone else. I agree, unfortunately, those people exist. They have suffered more, their child went through more, they know more, their grief is worse, they will do more for CDH, they are the self-proclaimed "Jesus of CDH" sent to save the world of this birth defect even though they have little experience and even less knowledge of CDH, they will be most popular in the CDH community, they need more support than other parents, their child will be remembered the most, etc.... people whose pain and grief is so great in their own eyes that they fail to see that others are in pain just as much and turn CDH into a competition instead of what it is - a tragic birth defect. These are the people who cause more pain than support, they start arguments, drama, can't get along with others or do whatever their pain leads them to do without a thought of how it could hurt someone else. This type of person exists when dealing with any tragedy or support group, not just CDH. This type of person seems to flourish on listservs, where they have a captive audience and a lot of direct attention to anything they say. In a huge support group of over 2500 people we have fortunately only had a few such people and they were long ago removed from our membership.

The point of this post is.... there is none of that at CHERUBS.




We have not used outdated listservs in a long time. We do not allow drama on our forums or in our membership. Our site and organization has been drama-free for almost 5 years (the last time we had a drama queen we had to remove). No misunderstandings. No cattiness. No mass exodus of members. No quitting of Advisors who can't get along. No mudsling. No backstabbing. No silly childish behavior. No negativity. No judgement. Only support. On the internet where meanness is common and people can hide behind anonymity to say the most cruel things... this is a rarity to have a totally positive and supportive group. And we are so proud of that!

On our site, parents can talk freely without the fear of being judged.
Everyone is heard. Everyone is supported. There are no drama queens. There are no cliques. There are no popular members. Everyone is equal. It doesn't matter if you are an advisor, a board member, a volunteer or a new member - everyone is equal. Parents can log on and ask for prayers. They can brag about their child's achievements. They can vent about how hard it is to deal with CDH. They can share a silly story. They can share their fears. They can cry. And we are here for them, all of them. 24 hours a day, 7 days a week. CHERUBS is here.

















Sunday, November 9, 2008

Finally the government caught up on something CHERUBS has known for years!

S. 1810: Prenatally and Postnatally Diagnosed Conditions Awareness Act

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810

Several years ago CHERUBS started a movement for better ultrasound technology, information for parents diagnosed with a sick child in utero and support referrals. A parent sent me the link above this morning - Congress finally passed this! How wonderful for all CDH families and families of children born with any birth defect or genetic anomaly! Below is one of the logos that we used back in the day when we petitioned for for this act. We set it aside to work on other things, plus it was getting too sticky (public charities cannot lobby Congress). But isn't it wonderful that it has finally been passed!?





Summary from the site:

10/8/2008--Public Law.
Prenatally and Postnatally Diagnosed Conditions Awareness Act -
Section 3 -

Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.
Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.