Thursday, April 30, 2009

Resources for Families Dealing With Congenital Diaphragmatic Hernia

I've been told today in several ways that our resources are hard to find - since so many new and expectant families had no idea we offer so much! So I wanted to make a list of what we offer and a link to the services to make it easier:

Our Web Site - more information about CDH than anywhere on the net with 1000's of pages!

All About CDH - information, diagrams, videos and more.

CDH Forums for Families - over 100 posts each day, 100's of topics. Get advice, help, info and support 24/7 from parents who have been in your shoes. Membership is FREE and it is all confidential.

CDH Parent Reference Guide - simple, easy to understand information on CDH written for parents whose babies were newly diagnosed.

CDH Brochure - in 4 different languages

CDH Research - research library, survey results and coming very, very soon an interactive CDH research survey for parents and researchers

Newsletters full of stories, news and much more -

International CDH Conference - members from several organizations and CDH researchers coming together

Congenital Diaphragmatic Hernia Day - May 17, 2009

CDH Events - tons and tons of events and get-togethers and fundraisers around the world

State & International Representatives - find local support.

On-Call Parents - need to talk to someone? They are on-call for you.

Videos of Cherubs - dozens of videos of cherubs, events, and more.

CDH Photo Albums - 100's of photos of children and adults born with CDH

CHERUBS Adopt A Hospital Program - help us to help families around the world by adopting a hospital to provide materials to for new CDH families

Our Blog -

Free On-Line Albums for CDH Families -

Free Blogs for CDH Families - keep your family and friends updated with these free blogs on our CDH informational site so they can also research!

CDH Blog Ring - group of CDH blogs written by parents

CDH Awareness Ticker - drop by and see how many babies have been born with CDH since 2000 as a new baby is diagnosed every 6 minutes somewhere in the world.

Research Library - add your links or view the links of others to CDH research articles and sites.

Personalized CDH Awareness Ribbon - Order a personalized ribbon with your cherub's name, date(s) and photo - send them to

"Stories of Cherubs" Vol. I & II - full of stories of 100's of families who have dealt with CDH

CDH Calender - featuring 100's of faces of children born with CDH

Congenital Diaphragmatic Hernia Awareness Items - including Clothes, Bibs, Maternity Shirts, Totes, Journals, Posters, Hats, and much, much, much more -

CDH Awareness Ribbon Car Magnets - Also available in a larger size

CDH Awareness Ribbon Buttons - just 18 cents each!!!!

CDH Awareness Bracelets - pink, blue and yellow silicone bracelets that say "CDH Awareness"

CDH Awareness Postage Stamps -

CDH Awareness Mailing Labels - download and print for free!

Random Acts of Kindness CDH Awareness Cards - there is no nicer way to raise awareness!

CHERUBS Facebook Group - talk to other CDH parents on Facebook

CHERUBS Myspace Page - talk to other CDH parents on Myspace

More Downloadable Info - info on where donations go, our non-profit paperwork, older newsletters, event brochures and more!

This is just a small list of what we offer and doesn't even include most of our awareness activities and projects. Drop on by our site and take a look at how CHERUBS has been helping families deal with Congenital Diaphragmatic Hernia for 14 years.

Cherubs Who Recently Received Their Wings

The following cherubs recently received their wings since our last newsletter. Please keep their families in your thoughts and prayers!

Virginia "Addison" Acord
Layla Mae Burket
Caleb Ray Cox
Grayton Karleigh Creekbaum
Hannah Alysabeth D.
Ava Rose Daher
Nicholas Robert Doades
Jack Arthur Dowling
Connie Katherine Evans
Kaden Michael Ferguson
Kaitlynn Rene Foret
Brandon Christian Frush
Gwendolynn Leigh Glover
Callie Grace Gould
Anika Faith Guertin
Celeste M Hall
Jessica Howell
Ryan Heustess Inman
Kaden Alex Kuehl
Kaylie Kathryn Marczak
Jacob Travis Meyerson
Maxwell Christopher Mocahbee
Audrey Aileen Monreal
Jacob Alexander Morrison
Jack Joseph Nelson
Emadeane Rose Owen
Corben Hudson Blake Paone
Jadyn Ryanne Paxton
Vito Robert Pensavecchia
Devin Scott Person
Brandon Daniel Peterson
Bryan Taylor Piazza
Kayla Nicole Rubio
Isaac James Santimaw
Anthony Bryce Smith
Dylan Joel Smith
Marley Jane Steingass
Nicholas Walter Treska

**this is only a list of those cherubs whose parents gave us permission to publish their names. It also includes cherubs whose parents just joined our organization in the last 4 months.

Please help us to raise Congenital Diaphragmatic Hernia Awareness and Research so that someday soon no more babies will be lost to CDH.

Cherubs On Their Way

The following babies are expected soon. They have all been diagnosed with Congenital Diaphragmatic Hernia. Please keep them and their families in your prayers.

Jon Lee S. - Due 2009-04-11
Andrew Lee Whitten - Due 2009-04-17
Gabriela Monteiro - Due 2009-05-14
Avery Mae Keirsey - Due 2009-05-15
Giavanna Digregorio - Due 2009-06-12
Baby Clarketimmins - Due 2009-06-15
James Reeve 2009-06-15
Cameron Zane Redmon 2009-06-20
Baby Price - Due 2009-06-21
Eli Camden Harvey - Due 2009-06-24
Baby Slager - Due 200907-02
Gabriella Morgan Groenewald - Due 2009-07-05
Baby Brogden - Due 2009-07-06
Kamryn Hope Studdard - Due 2009-07-08
Jacob Thomas Zimmerman - Due 2009-07-18
Ireland Rose B - Due 2009-08-23
Jonathan Louis Moehl - Due 2009-09-13
Makayla Jackson – Due ???
Amy Marie Meyers – Due ???

**this is only a list of those cherubs whose parents gave us permission to publish their names. There are many more babies on their way and this list does not include all the many, many newborn cherubs already here.

Wednesday, April 29, 2009

Letters For CDH

Adorable cherub Carter's mom, Kellie, is spearheading a letter campaign to try to get more media attention and awareness for CDH!

She's asking all CDH families and friends to write to celebrities and politicians and tell them about CDH. She is asking that you use blue envelopes.... I know most of you (quite understandably) steer clear of the turquoise that promotes the CDH awareness trademark but you can use baby blue or another shade! There are envelopes at Staples and Office Max that are blue with clouds on them! :)

For more information, you can go visit Kellie's blog at

WTG, Kellie!!!! :)

May 17 - Congenital Diaphragmatic Hernia Day

May 17th is almost here! This day is set aside to say a prayer (or make a wish) for the end of Congenital Diaphragmatic Hernia. CDH is a devastating birth defect that has struck more than half a million babies since 2000. That's a baby every 6 minutes diagnosed with CDH! 50% of these babies do not survive and the cause is not known. More awareness and research is desperately needed!!!!

On May 17th please take a moment to say a prayer (or make a wish) that the cause and prevention of CDH is found. There is power in prayer (and wishes)! And please tell at least 1 person about CDH to educate them about this birth defect. Just 1 person (or more!).

How else can you help?

Ask your church or other group to include info about CDH in their programs for that day. Attend an event. Wear a CDH ribbon, wear a shirt or other logo item. Hand out buttons. Release balloons. Send info to your family and friends. Post on your blogs and web sites. Post on your Facebook or Myspace account. Get more friends to join this event!


May, 2009 Events

Jak’s Cruise for Compassion – May 2 in Fayetteville, Arkansas to raise money for the Jack Ryan Gillham Foundation. For more information, please visit

Grayton's Glory 5K Run - May 9 in Alabama. You can reach Leigh for more information at

March for Babies – May 16 in San Antonio, TX. Join CHERUBS member Karen Myers as she marches in memory of her children Kaleigh and William and raises awareness and funds for the March of Dimes.

Peyton’s Promise – May 16 in Sea Isle City, NJ to raise money for the Children’s Hospital of Philadelphia CDH Research fund. For more information you can visit

Michigan Member Bowl-a-Thon - May 17 in Flint, Michigan. You can reach Barb at or 810-845-8480

Day of Prayer for CDH - May 17 around the world! You can reach Dawn at or 919-610-0129 or visit our blog at for more information

North Carolina Get-Together for members of CHERUBS - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at or 919-610-0129.

North Carolina Balloon Release - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at or 919-610-0129.


Official Congenital Diaphragmatic Hernia Awareness Ribbon buttons!

100 for $10 - that's a lot of CDH Awareness! Great project for May 17th - CDH Day of Prayer and Education!

This is the OFFICIAL Congenital Diaphragmatic Hernia Awareness Ribbon as voted on by CDH families themselves. It is not owned by anyone, there are no trademarks or copyrights to it and it is not used by any other cause. It is the CDH Awareness Ribbon recognized by 1000's of families around the world, Wikipedia and the members of the Alliance of Congenital Diaphragmatic Hernia Organizations, which is a group of dozens of CDH organizations, sites and researchers.

CHERUBS does not make any money off of your orders for buttons, not 1 cent! We just want everyone to raise awareness!!!

You can order other CDH awareness items at - a small percentage of the purchases at our cafepress store does go to CHERUBS.

It's all about raising CDH Awareness and hoping for an end to this devastating birth defect!

Thank you, on behalf of all CDH families!

Dawn M. Williamson

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
3650 Rogers Rd #290, Wake Forest, NC 27587

Tuesday, April 28, 2009

CHERUBS "Adopt A Hospital" Program

Would you like to help families affected by Congenital Diaphragmatic Hernia? Would you like to do something in honor or in memory of a cherub? CHERUBS has created a new program that will soon be helping CDH families across the country.

There are 2 options to our Adopt A Hospital program:

Adoption Plan #1 - You order / print out the list of items below and take them to the hospital. You also become a CHERUBS Hospital Ambassdor for new CDH families at that hospital and you periodically refurnish the materials.

Adoption Plan #2 - You make a $100 donation to CHERUBS and we order and put together the materials and send them to the hospital in honor / memory of your cherub.

CHERUBS Adopt A Hospital Care Package Includes:

1 copy of "Stories of Cherubs" Volume I
1 copy of "Stories of Cherubs" Volume II
1 CDH awareness poster
20 Parent Reference Guides
50 CHERUBS CDH Info Brochures
50 CDH Awareness Ribbon Pins
10 copies of our latest newsletter

Each item (except the CDH ribbon pins) is labeled with a sticker that says "Donated in honor of ________" or "Donated in memory of _________"

These items are then available to all CDH parents admitted into these hospitals. Upon joining CHERUBS, new parents will soon receive more information and support through our Gabe's Gifts program.

These items are an invaluable source of support and information for families affected by Congenital Diaphragmatic Hernia. Because there are so many hospitals, CHERUBS cannot possibly afford to donate to all hospitals and we are inviting our members and the general public to help us to help CDH families.

If you would like to Adopt A Hospital, please contact us at

2009 Congenital Diaphragmatic Hernia Awareness, Events, Fundraiser and more at CHERUBS

The latest list of CDH Fundraisers and Awareness Events!!!!

If you would like to add an event to the list, please contact Dawn at We are happy to list any event that benefits any hospitals or ACDHO organizations.

May, 2009

Jak’s Cruise for Compassion – May 2 in Fayetteville, Arkansas to raise money for the Jack Ryan Gillham Foundation. For more information, please visit

March for Babies – May 16 in San Antonio, TX. Join CHERUBS member Karen Myers as she marches in memory of her children Kaleigh and William and raises awareness and funds for the March of Dimes.

Peyton’s Promise – May 16 in Sea Isle City, NJ to raise money for the Children’s Hospital of Philadelphia CDH Research fund. For more information you can visit

Michigan Member Bowl-a-Thon - May 17 in Flint, Michigan. You can reach Barb at or 810-845-8480

Day of Prayer for CDH - May 17 around the world! You can reach Dawn at or 919-610-0129 or visit our blog at for more information

North Carolina Get-Together - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at or 919-610-0129.

North Carolina Balloon Release - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at or 919-610-0129.

June, 2009

2009 UK Conference - in Great Britain. You can reach Brenda at or 0800 731 6991.

Pennsylvania Get-Together – June 6, South Park Sunny Slope Pavilion in South Park, PA. You can reach Kate at or 412-414-7073.

July, 2009

Shelby's Summertime CHERUBS Celebration - July 11 in Indiana, contact Stephanie Olivarez at

2009 International Member Conference - July 22-25, San Antonio, Texas! You can reach Dawn at or 919-610-0129.

August, 2009

Ohio Get-Together - in Columbus, OH. You can reach Tara at or 614-275-0858.

September, 2009

Jeremiah’s Car Show - in Columbus, Ohio. You can reach Sarah at or 419-512-3446.

CHERUBS Ebay Auctions - around the world. You can reach Dawn at or 919-610-0129

October, 2009

2009 Australia Conference - in Australia. You can reach Danielle at or 03 5135 6999.

CHERUBS Masquerade Angel Ball - October 30, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at or 919-610-0129.

November, 2009

New England Get-Together - November 7, 2009 in Salem, Massachusetts. You can reach Corin at or 401-524-9182.

Gabe’s Bowl-a-Thon - November 8, 2009 in Cranston, RI. You can reach Corin at or 401-524-9182.

December, 2009

National Children’s Memorial Day - December 13, 2009 at 7:00 pm around the world

New England Truffle Sale - in Rhode Island. You can reach Corin at or 401-524-9182.

January, 2010

Shannon Crawford CDH Spaghetti Dinner - January 16, 2010 in Elizabeth, Pennsylvania. You can reach Kate at or 412-414-7073.

Blood Drive in Memory of Shane Torrence - January 28, 2010 in Wake Forest, NC. You can reach Dawn at or 919-610-0129.

February, 2010

Valentine's Day Cherubs Fundraiser - February 14, 2010 around the world. You can reach Dawn at or 919-610-0129

March, 2010

Friends of Faith Book Drive - Michigan (but you can participate from anywhere). You can reach Amy at

April, 2010

CHERUBS Golf Tournament - Wake Forest, NC. You can reach Dawn at or 919-610-0129.

July, 2010

2010 International Member Conference in San Francisco, California. You can reach Dawn at or 919-610-0129.

October, 2010

CHERUBS Masquerade Angel Ball - October 29, 2010 at Duke Gardens in Durham, NC. You can reach Dawn at or 919-610-0129.

Monday, April 27, 2009

Congenital Diaphragmatic Hernia Awareness Ribbon buttons! 18 cents each!!!

We found a great site to order CDH Awareness ribbon buttons very affordably! We love Cafepress but their buttons are a bit expensive. Here you can order your own buttons - as many as you want - and give them out to family, friends, medical staff, etc to raise awareness for Congenital Diaphragmatic Hernia!

We love that these buttons are not cloth ribbons so they do not get dirty or fade and there is no worry about accidentally washing them and having dye ruin clothing. These buttons easily fasten to any clothes, hats, jackets, purses, etc. I wear mine on my name badges at events for CHERUBS and my job.

Below are the graphics that you can save and upload to

This is the OFFICIAL Congenital Diaphragmatic Hernia Awareness Ribbon as voted on by CDH families themselves. It is not owned by anyone, there are no trademarks or copyrights to it and it is not used by any other cause. It is the CDH Awareness Ribbon recognized by 1000's of families around the world, Wikipedia and the members of the Alliance of Congenital Diaphragmatic Hernia Organizations, which is a group of dozens of CDH organizations, sites and researchers.

CHERUBS does not make any money off of your orders, not 1 cent! We just want everyone to raise awareness!!!

You can order these buttons through

The graphics below are free to use for anyone trying to raise awareness! Make sure to save the appropriate size templates for the buttons that you want to order!!!

1 inch button templates - 18 cents each if you order 100!!!!
(click on the image and it will take you to a larger image. Right click and choose Save As and save to your computer. Now you can upload the image to

1.25 inch button templates - 20 cents each if you order 100!!!!
(click on the image and it will take you to a larger image. Right click and choose Save As and save to your computer. Now you can upload the image to

1.5 inch button templates - 22 cents each if you order 100!!!!
(click on the image and it will take you to a larger image. Right click and choose Save As and save to your computer. Now you can upload the image to

2.25 inch button templates - 30 cents each if you order 100!!!!
(click on the image and it will take you to a larger image. Right click and choose Save As and save to your computer. Now you can upload the image to

(the dashes do not show up on the buttons)

"Ask Me About Congenital Diaphragmatic Hernia" buttons!
1.5 inch button template - 22 cents each if you order 100!!!!
(click on the image and it will take you to a larger image. Right click and choose Save As and save to your computer. Now you can upload the image to

(the dashes do not show up on the buttons)

Wonderful quote for CDH parents

"My child, you are a miracle borrowed from another world. Like the breath inside of me, you will stay a part of me. Winds of change, love will bring us closer, far from tears, fears and dangers, my love will be there by your side. You taught me the love that I never knew. You made me realize the things that the world has let me forget. In you, I discover so much of life and the preciousness of love. You are the reason I have been kept on my knees and I could never thank you enough for giving me a reason to believe."

by Natalia Visagie

Wednesday, April 22, 2009

The Ronald McDonald House & CHERUBS

CHERUBS is excited to announce that our 2009 Angel Ball will be a joint project for our organization and for the Ronald McDonald House of Durham, NC which provides shelter for families at Duke University Medical Center. CHERUBS and the Ronald McDonald House charities have always worked together through the years as we share in helping families of children born with Congenital Diaphragmatic Hernia. They provide an invaluable service to all families affected by all types of health problems. At least 50% of families affected by CDH have benefited from the services a Ronald McDonald House.

We are extremely excited to be working with Duke's Ronald McDonald House because it is just 2 blocks from beautiful Duke Gardens, where our Angel Ball is held and right around the corner from Duke Children's Hospital and Duke North (which houses the PICU and NICU). It is also very near and dear to my heart as I stayed there for 10 months when my son was at Duke. Even though Duke is not a CDH center and only has 4 to 5 CDH babies a year, this hospital is just 1 of the dozens of hospitals that help CDH families - with dozens of Ronald McDonald Houses that we hope to work with more in the future.

Ronald McDonald Houses help families in so very many ways - financially by providing a place to stay that is safe, germ-free, and extremely close to the hospital in case of emergency. They also provide some meals and transportation to and from the hospital. Most importantly, they provide emotional support and connections to other families also going through crisis. Their services are invaluable and we are so thankful for all that they do for CDH families. Not only because do they amazing things for the families but they help us as well in that because they provide this service to CDH families, we don't have to focus time, volunteers and money to help with housing for these families and can use those resources to focus on support, awareness and research.

We are extremely, extremely excited to be working with the Ronald McDonald House staff and volunteers, Duke's staff and so many local volunteers on this year's Angel Ball and in helping CDH families!

Formal press release with much more exciting information coming soon!

Over a half Million Babies born with Congenital Diaphragmatic Hernia Since 2000

This is a still capture of the counter. Pick up the actual functioning counter on our blog at

If you like the CDH stat counter on our blog, you can pick up the blogger / blogspot code at

HTML code can be downloaded at

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.


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.,,

Donate to research.

Participate in events.

Help support CDH families.


Thursday, April 16, 2009

Great Article For Those Thinking of Starting Foundations to Help CDH Families

With so many organizations and foundations helping CDH families there are so many great resources! See our post about the members of ACDHO for a list of groups that are truly helping CDH families.

Starting a non-profit is very hard work! We've seen a lot come and go over the years and unfortunately we've seen a couple with not so great reasons for starting and they ended up hurting more people than helping them. Starting a non-profit is not a decision to take lightly - it's a great responsibility and should be embarked upon with only the purest of intentions and a lot of research.

The following article is one of the most candid, realistic and helpful articles on non-profits that I have read in my 14 yrs in this field. We are getting a lot of interest in starting new foundations and organizations for many different services (yeah!!!) and I thought I'd post this article for everyone.

Incorporating - The Business Plan

by Donald A Griesmann, Esq.

From this article:


Take the first question below, "What is the purpose of your nonprofit?" (It is really not
yours, you know; it belongs to the board and the community, not an individual) Your
answer may be to save whales, to overcome AIDS, to work with troubled youth or to
have a community development corporation. Go beyond those answers. Review and
work on the rest of the questions and come back to the first one and see if you have some
additional purposes or reasons for starting a nonprofit. Put your answers down on paper.

1. Are you being HONEST with YOURSELF? What do you want out of this
for yourself? What is it in your character development that makes you the
one to do this? What do you stand for ethically? Are you looking for a job
or control or an organization that will be active the day after you die? Will
you be honest with others and up front about what you are looking for? Do
you have personal knowledge and/or experience with details, budgeting,
managing people and leadership? What are your personal strengths and
personal weaknesses and will you talk about them with others to make this
organization happen? Are you an ethical person?

2. What is the purpose of your nonprofit? Why are YOU starting a
nonprofit? Why are you starting THIS nonprofit? What is your vision,
your mission? Describe the opportunities that are available.

3. Can you partner or join with another nonprofit organization performing
the same or similar mission without incorporating another group? How
will you avoid duplication of mission, services and work?

4. What are your qualifications and experience to open and operate this
nonprofit business?

5. What kinds of activities will the nonprofit involve or sponsor? Who will
be responsible for these activities? When will they be accomplished? How
will you KNOW they were successful?

6. Will you be providing a service? Will that service be limited to certain
customers/clients/others? Who? How? Why? When? By whom? What
will be the proximity of your office and service to your

7. Will you have membership? If so, who will be eligible and what duties,
obligations, authority and dues will members have?

8. What will be the name of your organization? Have you reserved that
name with the State?

9. Where will you be opening and operating this nonprofit? Do you intend to
use property you or a family member owns?

10. Who will you have on your board of trustees? Will they and other people
provide money and assistance? Why will you have them on the board?
What part will they have in decision-making? What part will they play in
the organization? Please note that some states call the board “trustees” and
some call them “directors”. Be consistent with your state. Your state law
may also list the required officers.

11. What are the advantages and disadvantages to incorporating THIS
organization? Make two columns and list both advantages and the
opportunity and the disadvantages and risks. Talk to others who are
working with you to add to both lists. Do the advantages outweigh the

12. What are your resources? What are your talents, experience or education
to operate this organization? Will the board contribute financially to the
organization annually?

13. Will you have paid staff and personnel? Will you have volunteers? What
are their responsibilities and authority? What roles will they play in the
organization? What are the responsibilities of the organization to its employees and volunteers? Who will handle those responsibilities? What
written policies, procedures and forms will be required?

14. What is your experience in managing a nonprofit organization or other
endeavor? How good are you in writing and maintaining records, policies,
procedures and forms? Do you know what reporting you will have to do,
when and with whom?

15. Will your organization or personnel require licenses, registrations,
approvals, certificates or permits? Will your staff require licensing,
professional degrees, criminal background checks, or drug testing?

16. Do you own equipment or other forms of property? Do you plan on
acquiring property and equipment? Will you purchase or lease the
equipment and property? How will you acquire these resources? How
will you pay for renovations, furniture, equipment and signs at an office?
How will you pay for the continuing maintenance and improvements?

17. How and where will you keep supplies, stock and inventory?

18. What are your financial needs? Does the organization have a bank
account? What are your financial skills? What kind of grants or funds will
you need? How much money will you need to begin to open this
organization and sustain it - for 1 to 6 to 12 months, or for three years?
Where will that money come from? How will you assure fiscal integrity?

19. What potential liability and risks does this nonprofit have? What insurance
protection will you need? How will risk management assessed and be

20. Have you received any training, education or technical assistance to
operate a nonprofit business? If you have not received any training,
education or technical assistance, will you need that kind of help? Where
will you find that help? How will you pay for it?

21. Have you developed a business plan? Do you know what a business plan
is and why you need one?

22. How will you keep financial records and other important records such as
contracts, orders, wage payments, vouchers, bills of lading, bank accounts,
tax information, personnel records, annual reports, audits and so on?

23. Are there other nonprofits or for-profit groups - competition - like yours in
the community where you will open? How and why is your nonprofit
different than they are?

24. What are the major impediments for you to start this organization? What
are the barriers? How will you overcome these impediments and barriers?

25.How will you advertise or market the nonprofit's service? How will you
get customers/clients/supporters? What will be your niche or specialty in
the community you serve, the market place?

26. Have you or other members of your family and friends operated a business
or another nonprofit? Will they help you in this enterprise? What will
that help be? Are you aware of rules on conflict of interest and
intermediate sanctions?

27. Does your group plan on dissolving after a period of time or is it a long-
range project?

28. Do you believe the organization will be involved with lobbying, advocacy
and/or political activities?
Do you have the right stuff to create, maintain and sustain this dream?


This is the start of the questions. Jot down your answers as you read this and the next
several sections.

1. You do not have a group of people who share your mission, passion and sense of
vision who will work with you to create this nonprofit tax exempt organization.

2. You are not sure whether other people will work with you on the project.

3. You left a similar organization and you want to compete with them.

4. You really do not know how much work it will take to incorporate in the State
and file with the Internal Revenue Service.

5. You do not expect to raise money or seek grants, at least no more than two to
three thousand dollars a year.

6. You are not sure what kind of work goes into operating a nonprofit corporation
after it is incorporated and recognized by the State as a nonprofit organization and
by the IRS as a tax exempt organization.

7. You know there is a need for this service but you have not documented the need
and do not know how to go about assessing and meeting the need.

8. You believe it is easy to incorporate a nonprofit tax exempt organization.

9. You believe it is easy to operate, sustain and maintain a nonprofit organization.

10. You believe it will be easy to raise the money to accomplish your goals and

11. You like to be independent.

12. You have a great idea, this is a great opportunity and you are concerned that other
people who become involved will change the programs and activities you want.

13. You and your family want to control the organization so that it will be run right.

14. You want to be the chief executive officer such as the executive director for a
salary and sit on the board as chairperson.

15. You are going to aggressively seek grants because it is easy.
Please rethink why you want to start a nonprofit. There are many great reasons and
motivations but those are not among them. Nonprofits as with for-profit businesses can
fail. The reasons listed above will help you along the path to failure. Nonprofits can fail
when they are not mission-driven with a business-sense but driven by some other force.

CHERUBS Pennsylvania Get-Together - June 6, 2009

CHERUBS (Kate Crawford, PA State Rep)

Saturday, June 6, 2009
12:00pm - 8:00pm
South Park Sunny Slope Pavilion
Sunny Slope

South Park, PA

CHERUBS is hosting the Pennsylvania Get Together. A time to meet other parents from the area and discuss your CDH journey. Have fun and meet new friends! You can reach Kate at

You *must* be members of CHERUBS to attend CHERUBS events! Membership is free so make sure to fill out a form at

Wednesday, April 15, 2009

Right Now

Right now, as I sit here on this beautiful spring day enjoying a sandwich and working, I am so thankful for my blessings. But as I sit here, I know I take for granted that somewhere this moment is devastating to someone.

Right now, some one is hearing the words "Congenital Diaphragmatic Hernia" for the first time. And their life will never be the same.

Right now, a couple that went into an ultrasound appointment hoping to find out if their baby was a boy or girl now longer cares what gender their baby is. They just want their child to survive.

Right now, in a pediatric intensive care unit, somewhere a mom is sitting beside her newborn and trying to barter with God for her baby's life.

Right now, a family is praying that their baby will fight off an infection and make it through the night, pacing the hospital waiting room and waiting for test results. And praying that the antibiotics don't do more harm than good.

Right now, a family sits in the OR waiting room, waiting for news about their child's CDH repair or chest tube placement or Nissen or G-tube placement. Hoping that their baby will be able to come off the ventilator easily after surgery.

Right now, a mom sits at home with child, crying because she is so frustrated that she can't get her baby to eat by mouth. Again. And worried that the feeding tube she uses to make sure her child gets enough calories will always be there.

Right now, a couple tries to decide if it's wise to take their child to a playground because they are terrified he / she will pick up a virus that could devastate their already fragile lungs. So they sit at home in isolation. Again.

Right now, a couple sits in a Ronald McDonald House, waiting for visiting hours to go see their child. And so thankful that they have a place to stay and other families to talk to. But it's not home and it's not a situation they ever wanted to be in.

Right now, a mom is lovingly taking care of her child's scar; cleaning and re bandaging it. But it's not from falling off of a bike or stumbling playing hop-scotch. It's from a major surgery and it will be scar is that is always there, even after it's healed.

Right now a dad is waiting for x-ray results, hoping against hope that his child hasn't reherniated.

Right now, a family is sitting in a funeral parlor choosing a casket and trying to decide where to bury their baby that they never got to bring home.

Every 6 minutes a child is diagnosed with CDH.

The time to find the cause and prevention of CDH is right now.

Tuesday, April 14, 2009

ACDHO - groups / organizations that truly help and support CDH families and the CDH Community

ACDHO - The Alliance of Congenital Diaphragmatic Hernia Organizations

Alliance of many CDH Organizations supporting families and research of Congenital Diaphragmatic Hernia. This listserv is for organization founders, presidents and CEO's to keep each other abreast of research studies, new procedures, and organization problems. By working together as a team we can support each other, and the babies and families, in the fight against CDH.

These are the CDH organizations that truly support these babies and work together. We are a large Global CDH community working to increase research, make sure that all families have information and support and protect CDH awareness so that it belongs to all.

Each organization in ACDHO is equal, there are no leaders. Organizations / groups / sites invited into ACHO have shown high integrity in helping CDH families, offer research or support for CDH and a clear desire to work with the entire CDH community. Invitations are by a majority vote to secure that ACDHO goals remain positive, that the group works well together and that ACDHO is a safe environment to work together to help CDH families.

This listserv / alliance is *not* for individual CDH parents, survivors, etc. Please join the various groups and organizations for CDH information, support, research and awareness that offer services at the member level for CDH families.

Organizations / sites / groups that are members or who have been invited and that show a high degree of integrity in helping the CDH community and that we support are:

CHERUBS Australia
A Rainbow of Hope
Jack Ryan Gillham Foundation
Olivia Raine Foundation
Cody's Foundation
Kays Kids / Real Hope For CDH
Johns Hopkins Unnamed CDH Group
Little Lambs
The J.C. Nicholson II Research Foundation
En Stitching Hernia Diafragmatica (The Netherlands)
Ernia Diaframmatica Congenita gruppo di supporto (Italy)
Association Hernie Daphragmatique (France)
International CDH Study Group
Toronto Children's Hospital CDH Clinic
UCSF Fetal Treatment Center
Boston Children's Hospital / Harvard University CDH Clinic
Wisconsin Children's Hospital
Vanderbilt Children's Hospital
St. Louis Children's Hospital / Washington University CDH Research
University of Florida, Shands, CDH Clinic

Please show your support to these groups and organizations who support CDH families!

Congenital Diaphragmatic Hernia Blog Ring

CDH families all over the internet are joining in on the Congenital Diaphragmatic Hernia Blog Webring. A webring connects sites or blogs with a similar interest so that readers can turn from site to site (or blog to blog) throughout the ring. Over 50 CDH blogs are currently in this ring.

To join, you can go here:

To flip through the blogs, just click on Next or Previous under the blogs ring logo to the right of our blog.

Friday, April 10, 2009

March of Dimes Walk for Babies

Please support Karen Myers as she participate's in March of Dimes Walk for Babies' campaign.

May 16, 2009
200 North Crickett Drive
San Antonio, TX 78226

In Loving Memory of (cherub) Kaleigh 2002 and William 2005

Posted by their mom, Karen:

This will be our family's 5th year to participate in March for Babies for March of Dimes and I am happy to say we have had great success with the help of our family and friends. The March of Dimes has supported research for the birth defect Congenital Diaphragmatic Hernia (CDH) that Kaleigh was born and passed away from. We found out when I was 20 weeks pregnant that she would be born with this devastating birth defect and the Dr.s gave her a 60% chance to live. From the moment she was born (full term on her due date) she faced the fight of her life. She was immediately placed on a ventilator and after 3 days of fighting to keep her stable she was placed on Extra Corporeal Membrane Oxygenation (ECMO) a heart lung bypass machine. She spent 9 days on it then was taken off to have surgery to repair her defect and take her stomach, intestines, spleen and tip of her liver out of her chest and place them back into her abdomen where they belonged so what little lung she had could start to grow and work. Unfortunately on her 17th day of life her body couldn't oxygenate itself even with artificial help due to such immature and malformed lungs and we held our daughter for the very first and last time as her heart stopped beating. She gave us the most precious 17 days and fought with all her might and we love and miss her. Unfortunately our family then had to experience the heartbreak all over again as we learned when I was 27 weeks pregnant that our son William Logan's heart had stopped beating and he was born an angel due to Non-immune Hydrops Fetalis. It broke our hearts knowing he would never know his mommy or daddy's touch. The March of Dimes is wonderful in providing detailed and helpful information for families with children born with birth defects. I know they were a great resource for me and my family. The funds we raise may seem like a drop in the bucket but every little bit counts and hopefully one day I will stop meeting families who have had to endure the heartbreak of loosing a child, whether it be to prematurity, birth defects or illness.

Please join our family by signing up to walk on our team, fund raise for the team or by donating.....we can save babies together.


The Myers Family

Will, Karen, Alec, Aubrey and Jackson

Remembering Kaleigh and William Logan always........FOREVER OUR SUNSHINES!!

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

Day of Prayer & Education for CDH - Raise CDH Awareness Around The World

Educating the public about CDH through churches, clubs and organizations


Sunday, May 17, 2009
12:00am - 11:55pm
YOUR TOWN - you don't have to go anywhere!

May 17, 2009 - CDH needs YOUR help, in YOUR town!

Just say a prayer / wish for the end of CDH - that is all!

This is at YOUR home, place of worship, etc... in YOUR town. You don't go anywhere!

Say a prayer on May 17, 2009 for all the families dealing with CDH!

If you go to church, please invite your congregation / synagogue / temple, etc to participate as well. If you're not religious, that's ok! Just say a wish for the end of CDH. This isn't about religion, it's about helping these babies, raising awareness and educating people about CDH. :)

The point of this event is to have prayers and wishes going around the world and to raise awareness of Congenital Diaphragmatic Hernia.

Please post this event on your blogs, web sites, Facebook or Myspace profiles and invite your family and friends to join as well. We'd like at least 5000 people on participating!


NOTE: This is in YOUR town, your house, your church or wherever you are! You don't have to go anywhere to participate! Just say a prayer / good wishes and tell someone about CDH!



On May 17, 2009 we invite all houses of worship, clubs and organizations to join us in raising Congenital Diaphragmatic Hernia Awareness!!!!

Churches and other houses of worship are a great place to raise awareness - their service programs often talk about charity work that they are involved in. We are asking all churches to include just a few paragraphs about CDH in their church bulletins on May 17, 2009. 1 church can raise awareness with 100's of people! If we all get our churches, friends and family's to join in with their churches, plus clubs and other organizations.... we can raise awareness around the world!!!!

"Churches for Cherubs" is just a rough draft name... we really don't have a name for this event. I just like the sound of that name. :) But it does include ALL churches, temples, synagogues, clubs, organizations, etc. Other CDH groups are welcome to participate and use a different name or "Churches for CDH" or "Day of Prayer for CDH" or whatever they'd like to join in! :)

Also, besides the educational part of this event... we would really like to ask those of you who pray to do so on this day. Pray for the babies and families affected by CDH, pray for the researchers and doctors and nurses. Pray for the end of Congenital Diaphragmatic Hernia. No matter your beliefs - please think positive thoughts to the end of CDH so that no more babies and families will suffer from this devastating birth defect.

You can ask more than 1 church to participate - invite every church in your town or all the churches in your district!

We don't want to exclude those who don't go to church. If you don't go to church, you can participate in other ways! You can hold an event such as a balloon release or candle lighting ceremony. You can have a fundraiser. You can just wear your CDH Awareness clothing or a ribbon button and tell people about CDH.

How do we do this? Just take the following paragraphs to your pastor / rabbi / priest / leader and ask them to print them in the church bulletin for Sunday, May 17, 2009. Feel free to use any of our graphics or your cherub's photo in the bulletin!!


Congenital Diaphragmatic Hernia

Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs to move into the chest cavity and preventing the lungs from having enough room to grow. CDH occurs in 1 in every 2500 babies. 1600 babies in the US every year. Over a half million babies around the world since 2000. Every 10 minutes a baby is born with CDH.

Babies born with CDH undergo surgeries and long hospitalizations. 50% of babies born with CDH do not survive. The cause is not known.

Please join us in learning about CDH and raising awareness so that more research may be done and more babies saved.

For more information about CDH, you can visit

Jack's 2nd Annual Cruise for Compassion

CHERUBS is a huge fan of the Jack Ryan Gillham Foundation, if you are in Arkansas, please try to attend!

The Jack Ryan Gillham Foundation

Saturday, May 2, 2009
9:00am - 7:00pm
Begins and ends at Georges on Dickson St. in Fayetteville
Fayetteville, AR

Jack's cruise for compassion is a poker run geared toward raising funds for families of critially ill babies. There will be lots of great scenery, live music and cash prizes!!

Registration begins at 9:00am at Georges on Dickson St. in Fayetteville with the last bike out at 11:00am.

Stops will be at the Iron Horse Saloon in Prairie Grove, Cherokee Casino in West Siloam Springs, and Jose's Southwest Grille in Springdale.

Last bike in by 3:00pm at Georges on Dickson St. in Fayetteville.

We will also have a Springfest booth where poker hands and JRG Foundation merchandise may be purchased.

Winners will be announced at 3:30pm - CASH PRIZES!!!

You don't have to have a bike to for everyone!!!

More info on this event can be found on our website -

We are also seeking volunteers!! If you are interested, please email

Jak's Pub Crawl for CHERUBS UK

From Jak's mom, Melanie:

Saturday, April 11, 2009
7:30pm - 11:55pm
Last Orders Inn (Skenners)
Elliott Street
Tyldesley, United Kingdom

A charity pub crawl round Tyldesley in memory of Jak Parsons-Forshaw
In our jarma's or any nightwear you wish to venture round pubs in tyldesley is the website of the charity we will be raising money for

You can reach Melanie at

Peyton's Promise 5K Run/2K Family Fun Walk for CDH Research

Held by Peyton's family for CDH Research at CHOP

5K Run/2 K Walk for CDH Research
Held in Conjunction with Sea Isle's Spring Fling Weekend

Saturday, May 16, 2009
Registration Time: 9:30am
Race Time: 11:00am

Adults: $25 (Pre-register by May 6th for $20)
Kids 6-12: $10
Kids 5 and Under: FREE!!!

All net profits will be donated directly to Children's Hospital of Philadelphia (CHOP) for CDH Research

This is a certified 5K course
Awards will be provided
Shirts will be provided to the first 200 registrants

Please join us after the run/walk at The Carousel for food and family fun!

Visit to download a registration form and to read about Peyton's journey

If you are unable to make the run/walk and would still like to donate, please send checks payable to
"Peyton's Promise"
P.O. Box 122
Sea Isle City, NJ 08243

Texas Bake Sale for CHERUBS & Driscoll Children’s Hospital

From our Texas State Rep, Melissa Kelly. WTG Texas members!!!!

What a day!

We opened a little early and stayed a little late. We raffled off three delicious cakes and held a silent auction for an amazing cake shaped like a Leprechaun’s Hat .

Oh yes, that's really a cake.

Oh yes, that's really a cake.

We sold cookies, cupcakes, candy, bread, and candied apples, we mingled with cherubs and their families, and we raised a lot of awareness.

Oh, and we made a little money for two very good causes, too. $1200 total!!

Two of our tables as we were getting started

Two of our tables as we were getting started

Jo Ann and Tara: Cookie Pushers =D

Jo Ann and Tara: Cookie Pushers =D

Cherubs Andy (L) and Michael (R) being read to by their friend, Ben (Center)

Cherubs Andy (Left) and Michael (Right) being read to by their friend, Ben (Center)

Michael is unimpressed by bake sales

Michael is unimpressed by bake sales

CDH Moms reporting for duty! Rosaena, Rachel, Laura (a CDH survivor!) and Mel

CDH Moms reporting for duty! Rosaena, Rachel, Laura (a CDH survivor!) and Mel

On behalf of our CHERUBS members, I would like to thank Dee, Jo Ann, Monica, Tara, and all the members of the Driscoll Children’s Hospital team for making this event possible. We had an absolute blast and can’t wait to do it again next year!

Top 10 Children's Hospitals of 2009

As listed on

1. Children’s Hospital of Philadelphia
2. Children’s Hospital of Boston
3. Children’s Hospital of Wisconsin, Milwaukee
4. Cincinnati Children’s Hospital Medical Center
5. St. Louis Children’s Hospital
6. Nationwide Children’s Hospital, Columbus, Ohio
7. Texas Children’s Hospital, Houston
8. Children’s Healthcare of Atlanta
9. Rainbow Babies & Children’s Hospital, Cleveland
10. The Children’s Hospital, Denver

The full article and list can be viewed here.

**These are the top children's hospitals overall - not a list of the top CDH hospitals.**

Thanks to Melissa for finding this article and posting it on the TX CHERUBS blog!

Baby Blankets and Quilts Needed for New CDH Babies

From our New England Representative, Corin Nava:

We started the Gabriel’s Gift Bags project to provide new and expecting CDH parents with a gift bag filled with comfort items for their baby’s NICU stay. We would really like to include a handmade blanket which can be knit, crochet, or quilted in each of these bags. These blankets take a lot of time to make and we cannot do it by ourselves! There are too many parents out there who need these for us to keep up with, so we are looking for volunteers. If you are interested, in making 1 or 100, please let me know! You can email me at or join our yahoo group by clicking this link:


If you can, please consider doing this, it can really make a difference for those families in need of a little comfort.

Our goal is to start providing these by the end of this summer. We help on average 100 new and expectant families each year at CHERUBS so we really need a lot of help!

The above blanket was made by Logan's mom, Barb Wagner.

We Love It When CDH Families Get Together!

Here at CHERUBS we are strong advocates for CDH families meeting in person and getting to know each other and sharing experiences and support! We have many get-togethers around the world and our annual Congenital Diaphragmatic Hernia International Conference as well. But families often get-together on their own informally and below are photos of 2 such get-togethers.

CDH families meeting in Atlanta:

Carla (Joseph's mom), Lynne (Baer's mom), Marion and Jason (Virginia's parents) and Amy and Steve (Faith's parents)

Our South Carolina Representative, Lynne Brogdon (Baer's mom), rubbing Amy Miles' (Faith's mom) tummy.

Indiana Get-Together:

Barb Wagner (Logan's mom), Corin Nava (Nate's mom), Amy Miles (Faith's mom), Kate Crawford (Shannon's mom) and Stephanie Olivarez (Shelby's mom)

Stephanie and Kate surrounded by gorgeous little girls (Lexi, Lily, Grace and Makayla)

Barb, Corin, Kate and Stephanie

Kate making cookies with the Olivarez girls

Denver Children's Hospital:

Cherub Kristen Moats meets baby cherub, John Michael Larson

If you would like us to post photos of your get-together, please e-mail them to us at They will be posted in our newsletter and on our blog.

The History of the Official Congenital Diaphragmatic Hernia Awareness Ribbon

The first awareness ribbon or bracelet for CDH was discussed on CHERUBS old listservs in 2004. Because all the colors are taken, we didn't want to impede on any other cause's ribbon or their awareness efforts. Besides, we widely used the "cherub" as our awareness symbol for CDH. We tossed the idea around and talked about it with CHERUBS members but there was no real desire to join in on the awareness ribbon bandwagon.

The very first awareness ribbon for Congenital Diaphragmatic Hernia was a turquoise ribbon created in memory of Drew Lewallen in May, 2006 and posted on Rainbow of Hope. Many of us feel that this is Drew's ribbon - and it is. Permission to use this ribbon on a larger scale for fundraising for 1 organization only and ownership of this ribbon was never given and copyrights belong to Drew's family.

Because of awareness issues now associated with another organization's co-opting of Drew's ribbon and trying to trademark it (twice), most families refrain from using the turquoise ribbon. Most families affected by Congenital Diaphragmatic Hernia view wearing turquoise or a turquoise ribbon as endorsing the trademark and helping to fund and encourage a corporation's bid to profit off their babies' pain and suffering and control awareness of this devastating birth defect. Many families do not want to be walking, talking billboards for something that they find morally and ethically wrong.

The Congenital Diaphragmatic Hernia community needed an awareness symbol that was free, not tainted with any ulterior motives, owned by no one and chosen by CDH families. We also wanted something that belonged to just the CDH community and not several other causes. The turquoise ribbon happens to also be used by many organizations and the public for Addiction Recovery, Lymphedema, Native American Reparations, Sexual Assault, Ovarian Cancer, Anxiety Disorders and more.

We are nothing if not original at CHERUBS and ethically, we could not have used a ribbon color that belonged to another cause or was copywritten by Drew's family. Besides, these CDH babies are so special that they deserve an original awareness ribbon all their own - so we came up with several ideas for an original awareness ribbon.

Members of several organizations voted for many days and a decision was made. The official congenital diaphragmatic hernia awareness ribbon, as voted on by CDH parents and survivors, is baby blue, pink and pale yellow with clouds.

This is the Congenital Diaphragmatic Hernia Awareness Ribbon recognized by the members of the Alliance of Congenital Diaphragmatic Diaphragmatic Hernia Organizations. Is it recognized by CHERUBS, the world's first and largest CDH organization with over 2800 members in 38 countries. It is the ribbon associated with the Congenital Diaphragmatic Hernia Research Study.
Wikipedia recognizes this ribbon. There is even a postage stamp with this ribbon, created February 12, 2008. Not to mention 1000's of items with this ribbon available on our stores and various other sites.

And now, there are personalized Congenital Diaphragmatic Hernia Awareness Ribbons:

If you would like one, please e-mail your child's photo, name and date(s) to and Fer and Barb will make your ribbon as soon as possible.

Some parents are even wearing their CDH ribbons as permanent tattoos:

The Official Congenital Diaphragmatic Hernia Awareness Ribbon is on 1000's of web sites, including those belonging to CDH organizations and the CDH Blog Ring.

We are putting together a project about the Official Congenital Diaphragmatic Hernia Awareness Ribbon and would love to use your photos. Please send in photos related to this ribbon, whether it's you wearing a hat with the ribbon, or your tattoo or standing beside your car magnet or beside your cherub's NICU bed with a ribbon posted beside it. Please send them to

We are also putting together a list of all the web sites that post this ribbon. If your web site is posting this ribbon please comment to this blog post with the URL to your site.

And feel free to comment and tell us how you are using this ribbon!