April 19 - Congenital Diaphragmatic Hernia Awareness Daily Celebration



April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY

April 19 Congenital Diaphragmatic Hernia Awareness Daily Celebration is about 1 thing - raising awareness for CDH and the babies it affects. ALL are invited to join in. From any group, any hospital, any country! It is owned by no one, restricted by no one, profited by no one. EVERYONE can join in, even if you personally have not been affected by CDH! CDH hurts babies EVERY day of the year!

♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in!  It is a day set aside to raise CDH Awareness and encourage others to do so every single day. ♥

WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!

Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.

In the past year, since CHERUBS and 1000's of CDH families have been able to use the term "Congenital Diaphragmatic Hernia Awareness" freely after winning the fight against the trademark on the phrase on April 19, 2010, we have raised CDH Awareness on an astronomical level.   CHERUBS has been on television, in numerous newpaper articles, several national contests, sold 100's of CDH Awareness items, enabled families to use free awareness graphics to get their own CDH Awareness gear, created over 250 personalized CDH Awareness ribbon graphics, submit the CDH Research Bill to Congressmen and found several co-sponsors, raised awareness at many events and conferences, created dozens of videos, included awareness in the CDH Baby Book, created the Save the Cherubs awareness campaign and even the first billboard.  All of this was made possible because we could use this phrase freely once again.

On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.

After several years of awareness being inhibited, we have a lot of catching up to do!!!!  We are working hard to make 2011 even better than 2010 to raise awareness and help babies affected by Congenital Diaphragmatic Hernia.   Join us, wherever you are, in helping the cherubs!

25 Easy Ways To Participate In the 2011 CDH Awareness Daily Celebration

1. Tell someone about CDH!
2. "Attend" the CDH Awareness Daily Facebook Event Page
3. Share the video above on Facebook, Myspace, Twitter or your blog and tell others whatCDH is
4. Use any of the graphics below on your blog, site or social media and tell others what CDH is
5. Ask others to participate in the CDH Research Bill and sign the petition
6. Use the above graphics as your profile photo on sites
7. Wear a ribbon
8. Wear a CDH Awareness shirt, hat or other item
9. Make a video in honor/memory of your cherub
10. Teach your children the CDH Kid's Song
11. Add a twibbon to your Facebook or Twitter accountRelease balloons
12. Light a candle
13. Decorate a jar and ask a local store / restaurant to let you set it up until Mother's Day to collect money for CDH Research
14. Start a Firstgiving page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
15. Start a Cause page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
16. Take CDH Awareness ribbon cookies or cupcakes to work
17. Participate in the Save the Cherubs campaign by taking photos
18. Put a sign on your car about CDH
19. Contact your local media to share your story
20. Let your cherub or other children wear wings all day to raise awareness
21. Hold an event or fundraiser (car wash, lemonade stand, collect change, work with local restaurant, etc)
22. Create a CDH Awareness blog or site
23. Collect items for the CDH HOPE Totebag Project
24. Donate to a CDH Research facility
25. Adopt a CDH Hospital

April 19, 2010 - "CDH Awareness Day"

CHERUBS hereby declares April 19, 2010 as "CDH Awareness Day" - as today it was granted back to the people it truly belongs to - CDH families and researchers!

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


TTAB Ruling - April 19, 2010

The beginning of it all.  The initial application to own a trademark on "Congenital Diaphragmatic Hernia Awareness", filed April 1, 2008 


http://tmportal.uspto.gov/external/portal/tow?SRCH=Y&isSubmitted=true&details=&SELECT=US+Serial+No&TEXT=77436855#


Note that the turquoise ribbon and proclamations are included in the application to own a trademark on "Congenital Diaphragmatic Hernia Awareness".   

 There is an additional trademark on "Congenital Diaphragmatic Hernia Awareness DAY", which was filed December 29, 2008.  It also includes the turquoise ribbon.  http://tmportal.uspto.gov/external/portal/tow?SRCH=Y&isSubmitted=true&details=&SELECT=US+Serial+No&TEXT=77640674#




CHERUBS petition to the TTAB Court (supported by several CDH groups and 1000's of families) to cancel the trademark to keep CDH Awareness free for all:

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

Recent response from the TTAB, which caused Breath of Hope to relinquish the trademark.

After 2 long years, Breath of Hope did the right thing:

Today, April 19, 2010, "Congenital Diaphragmatic Hernia Awareness" is given back to the CDH community.  Owned by no one, trademarked by no one, a date not specific to any person or organization.  While most raise CDH awareness every day, today is the first day in 3 years that we can do so without fear. 


Let's all move forward!




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

From BoH's Blog - 

"The Senate passed S. Resolution 204 for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day please click here to see this - this was done unanimously on April 14, 2010. Breath of Hope and other organizations have faced fierce opposition but this is proof that good prevails.

Since we started this campaign in 2007, there have been six entities that have started conducting medical research to benefit Congenital Diaphragmatic Hernia. Awareness leads to medical research that will lead to answers and treatments."

Does anyone know of anyone who opposed the day?  We know 1000's who opposed the TRADEMARKS on CDH Awareness and CDH Awareness Day and they opposed the use of the proclamations in those trademarks that were used to threaten and harass others.  And those who opposed the "ownership" of the day that allowed only select groups to participate.  But we don't know anyone who would oppose a day that may bring about CDH Awareness.  Did we miss something?

Also.... does anyone know those "6 entities that started their research as a result of this day"? I know of 1 that started thanks to a donation from CDH families in St. Louis on that day... but if we're missing 5 others, someone please let us know so that we can get families to join in on research. We do know of 5 others (and more) that are conducting CDH research - but knowing those researchers, we're sure given the fact that most signed the petition against the trademarks and they were researching CDH long before BoH came into existence... they might be understandably insulted by that statement. 

"faced fierce opposition but this is proof that good prevails"... we suppose CHERUBS is the "opposition" because we dared to speak up against the trademarks.

"Good" would be doing something good for the sake of helping others without any other motives, without causing or threatening harm to others.  That is most peoples' definition of good anyway.

Will CHERUBS participate in helping with the 2011 bill for the day?  Probably not.  It's still trademarked.  We may however put aside April 19th as a day to celebrate the fact that CDH Awareness is no longer trademarked and free for everyone to use without fear again.  1000's of families and researchers fought for that and it should be celebrated.

Sincerely.... congratulations to BOH on getting the bill passed. We do support all CDH awareness projects, even if we can't / chose not to participate in them. A lot of CDH families worked hard to write letters to get the day passed and it is a fete to have a unanimous vote by our politicians to help these babies. BOH and the families involved should be proud of their accomplishment.

And we do extend an invitation to BOH and all other groups to join in to help with the CDH Research Bill. It is not trademarked.  Our only mission is CDH Research and helping these babies.

 

On The Fourth Day of CDH Christmas....

On The Fourth Day of CDH Christmas CHERUBS is trying to give the CDH community hope and peace....

In November CHERUBS trademark and tort attorneys invited the owner of the trademark "Congenital Diaphragmatic Hernia Awareness" to sit down with our organization and our attorneys as a "CDH Summit" of sort to resolve the trademark issue and other issues. Our offer has been accepted and we will meet in January. After 6 years, this is the first time the other party has agreed to a sit down discussion so this is a very positive step for the entire CDH community and hopefully will lead to many new resources for CDH families.

Until the meeting and resolving of the trademark and other issues, CHERUBS will continue to work towards making Congenital Diaphragmatic Hernia Awareness free for everyone again, as well as helping to protect awareness of all causes through our Congressional Bill. The trademark trial will continue until a resolution has been made. Until that time, we would like to remind those of you who are listed as court witnesses that you have legal obligations to avoid communications with parties you are witnesses against and by law and ethics, they should not be contacting you. Hopefully this trademark matter will be resolved soon and we can all put this nonsense behind us and move forward.

We are very excited about this meeting and the opportunity for progress and peace that it brings!!!! We hope and pray that the CDH community returns to how it was 6 years ago when all charities, groups and families worked together and supported each other without conflict or competition. We ask that the entire CDH community pray for an end to the drama so that everyone can go back to focusing solely on helping families affected by Congenital Diaphragmatic Hernia. CHERUBS goal is, and always has been, to work with other CDH organizations and researchers to collectively help CDH families in a professional, respectful manner that always keeps the best interests of CDH families at heart and we are very hopeful and excited that others may join us in this focus.

Submit Your Videos to Go to Congress & help other families affected by Congenital Diaphragmatic Hernia!

We are working on a new video to release with the Congressional Bill to stop the trademark on CDH Awareness. This bill and a CDH Research Bill will be ready next week for CDH families to help submit to Congress!

As most of you know the trademark on "Congenital Diaphragmatic Hernia Awareness" has wrecked havoc in the CDH community with charities being threatened with lawsuits other cyber bullying. It is the ONLY trademark of it's kind in the USPTO and is currently being Petitioned to Cancel by CHERUBS with the support of many other CDH organizations and over 6000 CDH families and pediatric surgeons.

The Free Awareness Bill video will have the history of why the trademark was created along with court audio, court documents and other public information to show that this trademark was created to harm others and prevent awareness. But it will feature these videos and these beautiful faces standing up against the trademark to keep awareness free for those affected by Congenital Diaphragmatic Hernia and all other causes.

Other causes and charities will also be submitting their own videos as well. We will be working with the entire non-profit community to help keep awareness free for everyone and to stop this precedent setting trademark that limits awareness on a devastating birth defect that desperately needs awareness.

The Cherubs Bill video will include photos and videos of cherubs and their stories battling CDH. As we all know there is virtually no funding for CDH research. CDH has affected over half a million babies since 2000 - this means CDH has killed over a quarter million babies since 2000. More research on Congenital Diaphragmatic Hernia to find the cause, prevention and best treatments is desperately needed.

When the paperwork gets submitted to our Congressmen and Senators, the videos will be included. If you would like your cherub on this video please upload your video to YouTube! Grieving families can also participate!

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 ribbons@cherubs-cdh.org 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 ribbons@cherubs-cdh.org

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!

"I Own Congenital Diaphragmatic Hernia Awareness" Video

Starring over 300 CDH families in the fight against the trademark on "Congenital Diaphragmatic Hernia Awareness" filed by Breath of Hope, Incorporated.

http://www.ipetitions.com/petition/cdhawareness/
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
http://www.cdhsupport.org
http://www.cdhresearch.org

Update on "Congenital Diaphragmatic Hernia Awareness" Trademark

I'd like to be able to tell you that Breath of Hope, Inc. dropped the trademark on "Congenital Diaphragmatic Hernia Awareness", but that has not happened. I would like to update you on a few developments and projects:
Formal Letter to Breath of Hope, Inc. Requesting End To CDH Awareness Trademark

http://cdhsupport.blogspot.com/2009/02/formal-letter-to-breath-of-hope-inc.html

On February 24, 2009, a formal 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.

On March 6, we received an updated response to our amended Petition to Cancel paperwork for the USPTO. Once again, they are claiming that Breath of Hope, Incorporated is the only entity that should be allowed to use the phrase "Congenital Diaphragmatic Hernia Awareness". Once again, Breath of Hope, Inc. is trying to deny CDH families, medical care providers and other organizations from freely raising Congenital Diaphragmatic Hernia Awareness.

Would You Like To Be A Court Witness (by phone)?

We are putting together our list of list of witnesses who will testify that "Congenital Diaphragmatic Hernia Awareness" is a common term. You do not need to testify to anything or talk about anything else. Just that CDH has affected you and you use and hear this term in common use. If you would like to participate, please e-mail me at dawn.williamson@cherubs-cdh.org with your full name, phone number and address. You need to respond by March 12th if you would like to be a witness.

This is an opportunity for all of you who are upset by this trademark to take a legal stand against it in the easiest way possible. You will go down on government record as a witness and you'd be doing this in honor / memory of your cherub (if you don't have a child born with CDH, that's ok! You can still be a witness and stand up for what's right! You would be helping ALL families of babies born with CDH, as well as everyone who has or will ever dealt with any kind of health issues to stop this precedent setting trademark. Can you imagine a world that allows "Cancer Awareness" or "Autism Awareness" or "Heart Defect Awareness" to become trademarked by one greedy corporation, stopping millions of people from raising awareness and research? Please help us in this very important trademark suit by being a witness.

We would like as many of you as possible to join in. Please know that Elizabeth *cannot* contact or harass you about this as that would be witness tampering. Please also know that the court will probably not call every witness listed - so you may or may not be called. Your family, friends, and cherub's medical care givers are welcome to testify as well!



Congenital Diaphragmatic Hernia Awareness Video

We like to put together a video of CDH families to stand up to this Congenital Diaphragmatic Hernia Awareness trademark. I would like *ALL* CDH families to participate! Not only will be this good for standing up to this trademark but for awareness in general. You can view some of the videos sent in at http://www.youtube.com/user/cdhsupport

To participate, send in a video clip just a few seconds long to membership@cherubs-cdh.org Make sure to include your name and your cherub's name! The video should include you, your cherub or your family just standing / sitting and saying "I own Congenital Diaphragmatic Hernia Awareness". Or "We own Congenital Diaphragmatic Hernia Awareness" if there more than one person in the video. Young CDH Survivors - Videos of CDH survivors saying this would be great... especially the little ones looking all cute! :) New Parents - videos of parents saying this in the NICU beside their cherubs would be great. The whole NICU experience and dealing with CDH is what is we're trying to raise awareness about! Expectant Parents - show off that tummy and say it! :) Grieving Families - hold a photo of your cherub and say it or stand at the cemetery or whatever you want to do to get the point across that this is a deadly birth defect and awareness is crucial.

You do not have to be professional to take the video. You don't have to be glammed up or in a studio. Just be yourselves!!! Use any video camera at all, it doesn't have to be perfect quality. The video will include your photos and a few slides about what CDH is. It will also include 1 or 2 slides stating that we are fighting to stop the trademark. CDH families and organizations (those not involved in helping BoH) are invited to participate. Photographs in our photo albums on our site will also be included.

This video will be posted on YouTube, our sites, blogs, Facebook, Myspace, etc. You'll be able to post it yourselves to wherever you'd like as well. This video will also be sent to the Board of Directors at Breath of Hope, Incorporated as a plea to get them to knock off this trademark nonsense.

We'd like to get at least 50 families participating! Deadline to get your video in is March 15! Feel free to post this to your blogs, myspaces, facebooks, etc or send it to other CDH families!

Petition to Stop The Trademark on "Congenital Diaphragmatic Hernia Awareness"

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

Don't forget to sign and forward this to your family and friends. This is also the place to stay updated on court proceedings.


Thank you all for your amazing support for CHERUBS and all CDH organizations, families and medical care providers in dealing with this trademark.

What YOU can do to make a real difference for these babies and CDH. Help ALL these babies and organizations in just 3 minutes for free!

Reminding everyone to sign who hasn't signed! Proceedings start tomorrow! http://www.ipetitions.com/petition/cdhawareness/

On a sidenote, a few legal blogs have written articles on this so that's some awareness! Not necessarily the positive CDH Awareness we would have wanted but awareness none the less. And every one of those articles (written by TM lawyers) agree that the trademark is insane, unethical and doesn't stand a chance. Even the comments to the articles agree. So do over 5000 CDH families, friends and medical professionals and now 9 CDH organizations. This is all a lot of wasted time and a lot of wasted donations by Breath of Hope, Inc (CHERUBS has not use any donations to fight this trademark). CDH families should come first - always - and this trademark never should have been filed.

It's a shame that Elizabeth Doyle-Propst and Breath of Hope, Inc are forcing the CDH community to go through all this but at the end, CDH Awareness will belong to ALL families, researchers and organizations again and no one will ever be able to trademark it. So this is all worth it to keep CDH Awareness safe and for awareness to continue to lead to more research.

What can you do today that will help ALL babies affected by CDH? That raises awareness all year round? That will allow millions to raise CDH Awareness without being restricted by 1 day or 1 organization or 1 person?

Sign the petition if you haven't already.

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

Forward it to family and friends and especially other CDH parents so they are aware and have the opportunity to sign too. Post on your blogs, other forums, listservs, sites, carepages, etc.

And say a prayer that this goes smoothly and without a lot of unnecessary drama.

Congenital Diaphragmatic Hernia Awareness Trademark

Update:

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

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

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

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

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

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

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