So you say you just want to raise CDH Awareness? Here’s a challenge for you! ;)


Don’t care what group does what to who?

Don’t want to know the details or drama of what’s going on?

Don’t want to hear about other problems when you have enough of your own dealing with your CDH baby or grief?

Don’t care about lawsuits, threats, perjury, audits, blah, blah, blah….?

You just want to raise as much CDH Awareness as possible?!!!

That’s ok!!!!!!! 🙂 In fact, that’s GREAT!!!!!

That means that you will want to be a part of May 17th since it’s for ALL organizations and CDH families and you truly want to just raise awareness!!!!!! 😉

http://cdhsupport.org/awareness/cdhday.php

It’s not about one group, one person or even raising money. It’s about raising CDH awareness!!! It’s about saying a prayer (or making a wish) for the end of CDH. Because that’s the goal, isn’t it?

* You don’t have to go anywhere *
* You don’t have to spend any money *

Just say a prayer (or making a wish) for the end of CDH and tell at least 1 person about CDH. That’s it! How easy is that? (You can do more if you wish – visit the link for details!)

No drama. ALL organizations can participate! No trademarks. No one has to ask permission to join in. No one has to pay anyone for anything. Use the ribbon as much as you want. Sell it on anything you want for any group you want – we don’t care!!! Just raise CDH awareness!! 🙂

Too many babies are dying from CDH. Too many families are devastated. Drama and politics and money should not be stopping awareness if that’s what’s needed to help these children!

So how can you possibly say no? 😉

I hope to see everyone participating in this amazing day for these babies!!!!! 😀

Please join the event and invite your family and friends!!!!

http://cdhsupport.org/awareness/cdhday.php

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

Our latest issue of our newsletter will be out in a few weeks but I wanted to let you know about all the activities we have going on at CHERUBS! 2009 is a very, very busy year here with events going on around the world, including our 2009 International Member Conference in San Antonio, TX in July. I hope to see you all there!

March, 2009

March 16, Texas Bake Sale – Corpus Christi, TX. You can reach Melissa at 361-288-4698. http://txcherubs.wordpress.com/

March 28, Oakland Academy in Portage, MI Spring Carnival fundraiser. You can reach Amy at ame_amers@hotmail.com

Friends of Faith Book Drive – Michigan (but you can participate from anywhere). You can reach Amy at ame_amers@hotmail.com

April, 2009

Michigan JayCee’s Event – Contact Darcy for more info or Barb at bwagner@cherubs-cdh.org

CHERUBS UK Pub Crawl – April 11, Melanie Parsons http://www.facebook.com/event.php?sid=5b487216f38310cadf3be1f4321ad462&eid=71341216080

North Carolina Get-Together – in Raleigh, NC. Informal Chuck E. Cheese get-together for local NC families and to help plan the various NC events we have going on! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129 http://nccherubs.wordpress.com/

May, 2009

Grayton’s Glory 5K Run – May 9 in Alabama. You can reach Leigh for more information at leigh.creekbaum@ubs.com

Michigan Member Bowl-a-Thon – May 17 in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480

Day of Prayer for CDH – May 17 around the world! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129

North Carolina Walk for Cherubs – May 17 in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://nccherubs.wordpress.com/

NC Balloon Release for Cherubs – May 17 in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://nccherubs.wordpress.com/

CHERUBS Ebay Auctions – around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129

June, 2009

2009 UK Conference – in Great Britain. You can reach Brenda at blane@cherubs-cdh.org or 0800 731 6991. http://www.uk-cherubs.org.uk/

Pennsylvania Get-Together – You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073. http://pacherubs.wordpress.com/

July, 2009

Shelby’s Summertime CHERUBS Celebration – July 11 in Indiana, contact Stephanie Olivarez at solivarez@cherubs-cdh.org

2009 International Member Conference – July 22-25, San Antonio, Texas! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsconference.org

August, 2009

Ohio Get-Together – in Columbus, OH. You can reach Tara at thall@cherubs-cdh.org or 614-275-0858. http://cherubs-ohio.wordpress.com/

September, 2009

Jeremiah’s Car Show – in Columbus, Ohio. You can reach Sarah at sdeskins@cherubs-cdh.org or 419-512-3446. http://cherubs-ohio.wordpress.com/

October, 2009

2009 Australia Conference – in Australia. You can reach Danielle at dkessner@cherubs-cdh.org or 03 5135 6999. http://www.cdh.org.au/

New England Get-Together – in Salem, Massachusetts. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182. http://newenglandcherubs.wordpress.com/

Gabe’s Bowl-a-Thon – in Cranston, RI. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182. http://newenglandcherubs.wordpress.com/

CHERUBS Masquerade Angel Ball – October 30, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsangelball.org

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 cnava@cherubs-cdh.org or 401-524-9182. http://newenglandcherubs.wordpress.com/

January, 2010

Shannon Crawford CDH Spaghetti Dinner – January 16, 2010 in Elizabeth, Pennsylvania. You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073. http://pacherubs.wordpress.com/

Blood Drive in Memory of Shane Torrence – January 28, 2010 in Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://nccherubs.wordpress.com/

February, 2010

Valentine’s Day Cherubs Fundraiser – February 14, 2010 around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129

April, 2010

CHERUBS Golf Tournament – Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsgolftournament.org

July, 2010

2010 International Member Conference in San Francisco, California. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsconference.org

October, 2010

CHERUBS Masquerade Angel Ball – October 29, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsangelball.org

Formal Letter to Breath of Hope, Inc. Requesting End To CDH Awareness Trademark

On February 24, 2009, the following letter was sent to the Board Members of Breath of Hope, Incorporated. It is our formal attempt to end this trademark issue peacefully and to request that their organization do what is best for all families affected by Congenital Diaphragmatic Hernia.

This is our effort to resolve this particular issue and end this trial and to save the entire CDH Community 2 years of USPTO trial dates and to use our time and resources to better help CDH families.

The trademark trial is continuing, and will go forward, unless Breath of Hope, Inc. decides to resolve this issue.

What happens next is up to Breath of Hope, Inc and it’s Board Members.

——————————————

Ms. Doyle-Propst,

This communication is only for mediation purposes of attempting to resolve the “Congenital Diaphragmatic Hernia Awareness” trademark issue. For the sake of having a peaceful dialog, we will keep this letter to the point and not comment on any other issues. We hope that you can do the same and help us to find a realistic and positive solution to this trademark issue.

The trademark on “Congenital Diaphragmatic Hernia Awareness” has been extremely detrimental to the entire CDH community. The “pinkwashing” excuse has failed to give any valid reasoning of why Breath of Hope, Inc. has filed the trademark on “Congenital Diaphragmatic Hernia Awareness”. The idea that anyone could own “Congenital Diaphragmatic Hernia Awareness” has deeply angered the majority of the CDH community, as it has hindered Congenital Diaphragmatic Hernia Awareness itself. Nothing good has, or could, come from this. It is our sincere hope that you will do what is best for the entire CDH community and remove this trademark.

CHERUBS, and several other CDH organizations, do not feel that we should have to ask permission from you or Breath of Hope, Inc. to use a common term that we all use daily. To ask us, CDH families and researchers, to do so can and will only hinder progress of spreading Congenital Diaphragmatic Hernia Awareness. If you have not already read the comments at http://www.ipetitions.com/petition/cdhawareness we would like to ask you to do so. You can also read the comments at http://www.facebook.com/group.php?gid=56377210497.

Over 5700 CDH families, survivors, friends, pediatric surgeons, nurses and others have asked to stop this trademark – including many members of Breath of Hope, Inc (with some being past board members). It is from this group that we will pull witnesses that will tell the United States Patent and Trademark Office that “Congenital Diaphragmatic Hernia Awareness” is a common term.

On behalf of myself, CHERUBS and 1000’s of CDH families and medical staff, I would like to formally ask you to drop the trademark on “Congenital Diaphragmatic Hernia Awareness”. We all hope to work together to reach an agreement and better the CDH community.

If you agree to do so, we will agree to refrain from filing a Petition to Cancel on the “Congenital Diaphragmatic Hernia Awareness Day” trademark, even though we believe that every CDH family should have the right to participate without asking permission, being threatened or forced to give funds to Breath of Hope, Inc. We are all aware of your desire to own and control “Congenital Diaphragmatic Hernia Awareness Day” from other CDH organizations and, as an olive branch, are willing to allow the trademark for the day in lieu of the trademark on “Congenital Diaphragmatic Hernia Awareness” itself.

As always, all CHERUBS wants is for CDH families to have the support and information that they need, and to encourage Congenital Diaphragmatic Hernia awareness and research. We understand that this is the goal of all CDH organizations. We ask that you will reconsider this trademark and focus on doing what’s right for families affected by Congenital Diaphragmatic Hernia, and furthering the support that Breath of Hope, Inc gives. It is not our wish to hurt you or Breath of Hope, Inc. We simply have asked for this trademark to be canceled and the term “Congenital Diaphragmatic Hernia Awareness” returned to the community who has been affected by Congenital Diaphragmatic Hernia.

Sincerely,
Dawn M. Williamson
President & Founder


CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
3650 Rogers Rd, #290, Wake Forest, NC 27587
919-610-0129
815-425-9155 Fax
CC – CHERUBS Parent Advisory Board, Breath of Hope, Inc. Board Members, United States Patent & Trademark Office File
BCC – CHERUBS Legal Team, CHERUBS Medical Advisory Board, Members of The Alliance of Congenital Diaphragmatic Hernia Organizations

Churches for Cherubs – raise awareness around the world on May 17, 2009

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 whatever they’d like to join in! 🙂

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 http://www.cdhsupport.org



Why CHERUBS will *not* be participating in Congenital Diaphragmatic Hernia Awareness Day

Because of the legal and ethical issues behind “Congenital Diaphragmatic Hernia Awareness Day” and the fact that proclamations gathered by CDH families for this day were used in the registering of the “Congenital Diaphragmatic Hernia Awareness” trademark, CHERUBS gracefully chooses to decline to support this event.

http://www.ipetitions.com/petition/cdhawareness/

We respect the rights of our members and all CDH families to celebrate CDH Awareness on March 31 but in good conscience, we can not support this event or the organizations behind it.

Instead, CHERUBS chooses to support CDH families and awareness every day, by everyone. Freely. CHERUBS wishes to support the organizations and families who work hard, all year round, to stand up for our children and make sure that their rights and their memories are respected:

CHERUBS Australia
CHERUBS UK
Kays Kids
Jack Ryan Gillham Foundation
Little Lambs
Olivia Raine Foundation
Rainbow of Hope
CHERUBS

Let’s all show our support of these babies and the organizations and medical care providers who work hard to protect them and help them all year round.

Official Congenital Diaphragmatic Hernia Awareness Ribbon

CDH Awareness Ribbon

CDH Awareness Ribbon

Why is the CDH Awareness Ribbon blue and pink and yellow with clouds you ask? Several years ago on our old listserv, members of CHERUBS (then the only CDH group on the internet) talked about having an awareness ribbon. We batted the idea back and forth and didn’t go much further with it because it every color was already taken and it seemed a bit tacky to take a color that already belonged to other causes – we didn’t want to take away from their hard work promoting their cause with their ribbon. And we didn’t want to compete with other causes for a ribbon color, because well… that’s not very professional.

A couple of years ago, cherub with wings, Drew, had a ribbon made especially for him that his mom put on the Rainbow of Hope site. RoH is a site dedicated to Drew’s memory that has information about CDH. Jana is a sweetheart and well respected in the CDH community. Drew’s ribbon is turquoise.

Last year an organization decided to ‘borrow’ Drew’s ribbon for their own CDH ribbon. Soon this organization claimed rights to all CDH Awareness activities, events, etc – even tried to have this ribbon trademarked as their own – based on the fact that they wrote a few letters to governors for CDH Awareness Day proclamations. Because this was their project, CHERUBS respected it and stayed out of it. But soon other groups and parents who used that color ribbon or who said “Congenital Diaphragmatic Hernia Awareness Day” without explicit permission of this small group of about 35 real people were getting threatened with lawsuits. Then CHERUBS was getting threatened if we didn’t stop using the term “Congenital Diaphragmatic Hernia Awareness”. CHERUBS tries to steer clear of all drama – but we do stand up for CDH families. The decision was made to not use the turquoise ribbon to avoid further drama and threats from that group.

Last year, our members asked for an official Congenital Diaphragmatic Hernia Awareness Ribbon – one that was chosen by CDH families, not used by other causes and not embedded in threats and drama. All of our over 2000 members – all CDH families – were asked to recommend and then vote for the official CDH Awareness Ribbon. There were several different ideas that went around but one thing was for certain – we wanted a ribbon that represented our children, our cause – a ribbon that is owned by ALL CDH families and can be used without fear. Not something assigned to them or dictated to them, not something some politician who is clueless about CDH signed on unintentionally, but something that they chose for their children. Baby blue, pink and yellow… similar to the ribbon for birth defects and clouds for those cherubs who do not survive – because half of these children do not survive.

To us, the turquoise ribbon is Drew’s ribbon and always will be… something sacred that belongs to his memory. How amazing that Jana chose to allow others to use it and how amazing she is to put up with all she has because of it.

This is not CHERUBS’ ribbon. It is not the ribbon of any 1 organization or person. This is the official Congenital Diaphragmatic Hernia Awareness Ribbon and it belongs to ALL of the families and children affected by CDH.