Dear Members and Friends,

We are thrilled to announce that we are working with Tupperware to raise funds to help families affected by CDH!  ALL money raised by this fundraiser will go directly to our CDH Family Assistance Fund, to help families with the financial burden of dealing with Congenital Diaphragmatic Hernia.   This fund is EMPTY so we really need your help to make this fundraiser a success so that we can help CDH families!  

http://www.helpmykitchen.com

Tupperware makes great gifts and lasts for years!   Wonderful goods that help a good cause - how can you go wrong?  :)

CHERUBS 2009 International Member Conference - May 13-16, 2010 in Orlando!

Summer Bay Resort Holiday Inn Express
Orlando, Florida

Our conferences are designed for families of CDH survivors, grieving CDH families, adult survivors and CDH researchers!  

Since our first conference in 2000, CHERUBS is proud to work with the world's best CDH hospitals and researchers to bring the families and the medical world together.   Our 2009 conference bought together 8 CDH groups and families from 4 countries!  

Members who have attended our conferences will tell you that they learned so much more about CDH, made new friends and gained a lot of support.

Conference Schedule:

Thursday, May 13, 2010

7:00 - 9:00 pm - Pizza Party and Introductions

Friday, May 14, 2010 - CDH Research

8:00 am - 12:00 am - Guest Researchers On Current CDH Research Studies

• Drs. Meaghan Russell and Mauro Longani from Mass General / Boston Children’s Hospital
• Drs. Marc Arkovitz and Julia Wynn from New York Presbyterian Columbia / DHREAMS
• Bella Belleza-Bascon, RN, MHA from Texas Children's Hospital / Fetal Center, Baylor College of Medicine

Saturday, May 15, 2010 - CDH Support

8:00 am - 8:45 am Round Table Discussions Session 1

• For CDH Survivors (choose one)
• Physical and Occupational Therapies
• Feeding Issues
• For Grieving CDH Families (choose one)
• Faith & Doubts In Grief
• Dealing With Anger

9:00 am - 9:45 am Round Table Discussions Session 2

• For CDH Survivors (choose one)
• IEPs for School Age Children
• Early Intervention for Infants & Toddlers

• For Grieving CDH Families (choose one)
• Grief and Siblings
• Dealing With Special Days

10:00 am - 10:45 am Round Table Discussions Session 3

• For CDH Survivors (choose one)
• Dealing with Family & Friends
• Marriage & Having a Special Needs Child
• For Grieving CDH Families (choose one)
• Dealing with Family & Friends
• Marriage & Grief

11:00 am - 11:45 am Round Table Discussions Session 4

• For CDH Survivors (choose one)
• Pregnancy After CDH
• Helping Other CDH Families
• For Grieving CDH Families (choose one)
• Pregnancy After CDH
• Creating Something Good From Sadness

Sunday, May 16, 2010 - CDH Awareness

8:00 am - 8:30 am - "Current and future global efforts to raise CDH Awareness" by Dawn Williamson, President & Founder

8:30 am - 9:30 am - Group discussion on how we can raise more CDH Awareness as a community

9:30 am - 10:30 am - Group discussion on how families can raise CDH Awareness in honor and in memory of individual cherubs.

10:30 am - 11:00 am - Saying Good-byes

We hope to see you there!

Our 2009 International Member Conference for families affected by CDH was a wonderful success!

Our conference concluded on Saturday, much to everyone's sadness. There were a few tears saying good-bye. We hope to all see each other again next year in San Francisco at our 2010 CDH Conference - along with lots of new families.


It truly was a wonderful week. Hopefully everyone left with more information on CDH, new friends and knowing that we are a big CDH family working together to help them and all those affected by Congenital Diaphragmatic Hernia.

CHERUBS New Tupperware Fundraier

Tubberware will donate 40% of purchases made for our fundraiser!!!!

http://order.tupperware.com/pls/htprod_www/!twx$eparty_ctl.p_guest_welcome?pv_eparty=7c8fff6ffc0b34aea848513af26b0fb8

Why Not My Cherub?.... A Letter To Grieving Moms on this Mother's Day

Mother's Day is very hard for CDH parents.  It is a celebration of the miracles of surviving cherubs but a reminder also of how close they came to losing them.  Being a parent is the greatest job in the world, being a grieving parent is the hardest job in the world.  For grieving moms, Mother's Day is sheer torture.   We are reposting this letter for them.  Happy Mother's Day to ALL mommies!


Dear Grieving Parent,

It is not because you were not worthy of your cherub - you were and are. You are so worthy that you have been entrusted to carry on your life's goals and theirs as well. You are so worthy that your cherub chose you to be his or her mommy and daddy during their short time here. You are so worthy that you were blessed enough to be the parent of a living angel... a child placed on earth to touch the hearts and lives of so many people. So much love and so many lessons put into such a short time. Not everyone can comprehend that great blessing and that great responsibility - but you were chosen.

It is not because of your faith or doubts. It is not because you didn't pray hard enough or because not enough people prayed for your cherub. There are cherubs who have had 1000's of people around the world praying for them... and they did not survive. We have had cherubs whose parents do not believe in religion and they have survived. Your prayers for a miracle were not refused. You have received miracles too... even though they may not be the one you wanted most. Prayers can sustain us through whatever CDH throws as us, helping us to make the right decisions, bringing us peace no matter the outcome.... and they can lift us up and carry us through grief.

It is not because you made a bad medical decision or did not fight hard enough for your child. Your cherub had a whole medical team fighting for them along side of you. You made all the best decisions that you could for your cherub. You were and are the best parent to your cherub that you can be. There are 1000's of healthy children who do not have parents who would fight for them.... your cherub was blessed to have you as parents just as you are to have had the opportunity to be a parent to your cherub. If CDH has taught us anything it is that it plays by no rules. Children with no diaphragm and little lung can survive while children with 2 full lungs might not. It has taught us that lung function is not the deciding factor. It has taught us that sometimes the best care in the world is not enough.

It is not because you couldn't offer your cherub the support or resources needed for a special needs child. It is not because you lack patience or skills. We have grieving members who are doctors, nurses... we have parents of survivors who were teenagers themselves. We have grieving members who are amazing, amazing parents and we have parents of survivors who have lost custody of their cherubs. We also have many, many parents of survivors who are amazing and prepared and ready to be wonderful parents to their cherubs. CDH does not care who is ready, who is able, who is best qualified to care for a cherub and who is not.

It is not because you didn't love your cherub enough. If love could spare babies from CDH, this horrible birth defect would not claim one more life. CDH shows no favoritism. It shows no prejudice. It truly is the luck of the draw who survives and who does not. It does not mean you are better or worse than anyone else. It is not fair. Your cherub did not chose to leave you. But they did chose to spend their time here with you. They did not choose wings over feet. They did not chose Heaven over staying here with you.

There is no good answer to why your cherub did not survive... but there are hundreds of answers as to why he or she should have. At CHERUBS, we all know the pain of CDH. The pain and grief of having a child born with a severe birth defect... some grieve over the loss of a healthy child as they struggle to deal with CDH in their surviving cherub and the loss of a dream. Some grieve a never-ending grief of losing the dream and the life of their cherub. But we all grieve, we all have questions that we may never get answers to.

We have all lost a lot. So many parents are grieving the losses of their babies right now. The CDH community has lost so many babies that we have all prayed for, loved from afar. But we have gained a lot too. So have the family members, friends, and even strangers. Each cherub has left their mark on this world and left it a little better than they found it. That is more than most people do in lifetimes that last decades. We should all should follow such beautiful examples as these children have left for us....

CHERUBS 2010 Newsletter Now On-Line!

Our 2010 Silver Lining newsletter is now available for download.   It has 32 pages full of Congenital Diaphragmatic Hernia information and all of CHERUBS news and other related CDH news!

You can download it at http://www.cdhnewsletter.org

Or click here for this issue - http://www.cdhnewsletter.org/CHERUBS2010Newsletter.pdf

CDH Survivor & Save the Cherubs CDH Awareness Campaign in the news!

 

 http://www.therecordofwilkes.com/newsa.asp?edition_number=550&pg=F

Local youth chosen Ambassador for CDH awareness campaign

By REBECCA TRIPLETT-JOHNSON

For The Record

Aaron Younce, son of Carl and Julie Younce of North Wilkesboro, has been chosen as one of several Ambassadors to represent children born with Congenital Diaphragmatic Hernia [CDH] for the 'Save the Cherubs' national awareness campaign.

Younce, a student at Mountain View Elementary School, has lived with the severe disorder since his birth in 1999.  His parents learned of the defect prior to his birth.  

 CDH occurs when the diaphragm fails to fully form, allowing the abdominal organs to move into the chest cavity preventing complete and normal lung development and growth.  One in every 2500 babies are born with CDH.

 Upon his birth, doctors gave his parents the horrific prognosis that he would not live. Younce spent the first three months of his life in the PICU and NICU at Wake Forest Baptist Medical Center where he underwent two major surgeries and numerous other medical procedures to help correct some of the most critical issues.  When his team of specialists determined he had gained enough strength to go home, his family turned their nursery into an in home hospital room equipped with life saving oxygen, heart monitors, suction machines, feeding pumps and pulse oximeter.  For many years, this was the normal everyday life in the home. 

With continued medical support, family love and God's blessings, Younce gained strength and abilities that enabled him to detach from his highly controlled and monitored lifestyle.  Today he is capable of living without daily oxygen except when he requires extra breathing help during bouts of illness.  However, CDH has left Younce with pulmonary hyperplasia of the left lung, pulmonary hypotension and asthma, making every other illness that he contracts, such as colds or viruses,  much more serious and harder to fight.

CDH, unknown to most, occurs as often as other defects such as Cystic Fibrosis and Spina Bifida.  The goal of the Raleigh based, national CDH CHERUBS non-profit organization is to bring awareness, understanding and hope to families fighting the deadly defect. 
     "When Aaron learned that he had been chosen to represent the CHERUBS, he was excited and relieved to know it would help people understand what he is living with," said his mother.  "After numerous questions from his friends at school as to what caused his many scars, he kidded with them and told them that he had been bitten by a shark.  He has always been very relaxed about discussing his illness and wants everyone else to understand it. By being one of the faces of this 'Save the Cherubs' campaign, he is glad that he will be able to help others who suffer from CDH and those who don't but want to understand it.

 Missy Severt, The Record Sports photographer and owner of Photo Memories Studios was chosen to photograph Younce for the campaign.  Her work will be showcased in the national awareness campaign in print and billboards.  The first digital billboard will be displayed in early May along Hwy 421 Bypass near Arby's.

 "Our family is proud to be part of such a wonderful project and appreciate all of the time that Missy put into the many photographs she took," said Younce. "We hope this will bring much awareness and education to a very serious and life threatening birth defect that, until now, has been unknown to almost everyone."

 For more information on CDH and "Save the Cherubs' go to www.savethecherubs.org

Prayers & Quotes for April 26, 2010

Prayers & Quotes for April 26, 2010

If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org.

Please keep the following in your thoughts and prayers:

Newborn cherub Quinn P. was born 4/9/10. He has had his CDH repair and came off the vent on day 12. He is on oxygen and will be soon working on feeds. He still has a bilateral inguinal hernia surgery to go through.

Newborn cherub Julia arrived 4/8 and has had her CDH repair. She needs prayers for healing, for doctors have found a blood clot in her tummy.

Newborn cherub Mekhaai R. is now home!!

Newborn cherub Kinley J.(second CDH baby born to this family), is off of ECMO, but still very sick (she got a serious infection after her CDH repair surgery). Please pray her liver and kidneys start functioning and she remains stable.

Newborn cherub Kellan V. is now home!!

Cherub Owain P. is home from his reherniation surgery that took place on 3/30! He is one strong little boy who has overcome so much.

Newborn cherub Micah P. is very sick. His heart is very sick. Please pray for his healing.

Cherub Jacob G. had surgery to put tubes in his ears last week.

Cherub Clodagh D. had her eventration repair and is recovering.

Angel cherub Lewis M.'s mom, Ingrid, is expecting a baby!

Cherub Holly M. is home from the hospital after her Gtube and nissen surgery and is recovering. Doctors found her organs were trying to reherniate again and had to move them back to where they needed to be.


To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications.


Cherubs on Their Way:

Cherub Noah A., due 5/30
Cherub "baby girl" A. due 5/20
Cherub Faith M., due 5/28
Cherub Owen T., due 6/6
Cherub "baby girl" E., due 6/26
Cherub Elijah V. due 7/12
Cherub Adalyn T., due 7/31
Cherub Niklas E., due 7/18
Cherub Osmund K., due 7/22
Cherub Heath F., due 9/3
Cherub baby C., due ?*
Cherub Erinn C., due ?*
Cherub Elliot , due ?*
Cherub baby F., due ?*
Cherub baby G., due ?*
Cherub Gavin W., due ?*
Cherub baby K., born in 1/2010*
Cherub baby V., born in 1/2010 *
Cherub baby R., born in 2/2010 *
Cherub baby H., born in 2/2010*
Cherub Baylee M., born in 3/2010*
Cherub baby A., due 4/20*
Cherub Jessica F., due 4/3*
Cherub Allisyn S., due 4/12*
Cherub baby D., due 4/14*
Cherub baby K., due 4/16*
Cherub baby G., due 4/19 *
Cherub Ary M., due 4/22 *
Cherub baby K., due 5/12
Cherub Jesse L., due 5/13
Cherub baby M., 6/13
Cherub Kaiya W., due 6/22
Cherub Abigail W., due 6/23
Cherub Brielle S., due 6/29
Cherub Arwyn J., due 7/7
Cherub Josiah B., due 7/13
Cherub baby M., due 7/19
Cherub Alice H., due 7/27
Cherub Shelbi R., due 7/30
Cherub Adalyn T., due 7/31
Cherub Finley D., due 8/13
Cherub Hailey Q., due 9/4

*have not received current updates on these precious babies

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.


Newly Grieving Families:

Newborn cherub Joshua C. arrived 3/36, 10 weeks early and amazed everybody around him with his strength. Joshua earned his wings on 4/11. Please keep this family in your thoughts and prayers for strength and comfort.

Newborn cherub Joshua E. was born 3/30 and earned his wings 3/31. Please keep this family in your thoughts and prayers.

Newborn cherub Ian H. was born 4/17 and earned his wings 4/18. Prayers for strength and comfort for this family during this difficult time.

Newborn cherub Jack D. was born and earned his wings on 4/17. Please keep this family in your thoughts and prayers.

Newborn cherub Landon D. was born 3/24 at 32 weeks and grew his wings on 3/25. Please keep this family in your thoughts and prayers.

Newborn cherub Emily G. was born 3/11 and her grew her wings on 3/12. Please pray for strength and comfort for this family.

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.

Newly Grieving Families:
Newborn cherub Zoe F. (6/3/2009 – 10/22/2009)
Newborn cherub Nguyen N. (6/8/2009 – 9/24/2009)
Newborn cherub Michael S. (7/2/2009 – 8/29/2009)
Newborn cherub Jay E. (8/24/2009 – 11/5/2009)
Newborn cherub Chloe T. (9/8/2009 – 9/11/2009)
Newborn cherub Vincent S. (9/16/2009 – 10/2/2009)
Newborn cherub Emma F. (10/3/2009 – 10/4/2009)
Newborn cherub Matthew D. (10/9/2009 – 10/9/2009)
Newborn cherub Nolan R. (10/9/2009 – 10/9/2009)
Newborn cherub Andrew H. (10/1/2009 – 10/30/2009)
Newborn cherub Mikayla D. (10/18/2009 – 10/26/2009)
Newborn cherub Maisie K. (11/2/2009 – 11/24/2009)
Newborn cherub Noah G. (11/11/2009 – 12/4/2009)
Newborn cherub Alicia C. (11/19/2009 – 11/25/2009)
Newborn cherub Toby P. (12/30/2009 – 12/31/2009)
Newborn cherub Jaden M. (1/5/2010 - 1/20/2010)
Newborn cherub Matthew P. (1/25/2010 – 2/18/2010)
Newborn cherub Ruben A. (2/17/2010 - 2/17/2010)
Newborn cherub Jayden G. (2/19/2010 – 3/14/2010)
Newborn cherub Kamila C. (2/24/2010 – 2/24/2010)
Newborn cherub Jocelyn R. (2/28/2010 – 2/28/2010)
Newborn cherub Mason B. (3/8/2010 – 3/9/2010)
Newborn cherub Landon D. (3/24/2010 – 3/24/2010)
Newborn cherub Austin M. (3/24/2010 - 3/26/2010)
Newborn cherub Gabryan G. (3/26/2010 – 4/2/2010)
Newborn cherub Enrique A. (? – ?)


Today’s Quotes:

“When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope” -Henri Nouwen

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." -Albert Einstein

"Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies." -Erich Fromm

"The angels are always near to those who are grieving, to whisper to them that their loved ones are safe in the hands of God." -Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994

Save the Cherubs Congenital Diaphragmatic Hernia Awareness Campaign

Our Photo Shoots are under way!!!!  We have had 4 photography shoots, have 20 more planned, photographers in dozens of states who are volunteering, a billboard in May, a television interview and a front page newspaper article!  This campaign is raising a whole lot of Congenital Diaphragmatic Hernia Awareness! 

Take a look at some of the gorgeous photos we have already begun to use to raise CDH Awareness!


Model Cherub:  Celie McGilberry
Photographer:  deAnn McGilberry

    


Model Cherub:  Aaron Younce
Photographer:  Missy Severt


    


Model Cherub:  Aaron Younce
Photographer:  Julie Younce

  


Model Cherub:  Brooke Sroka
Photographer:  Mandy Sroka Photography

     


Model Cherub:  Juan Pablo Arce
Photographer:  Arce Photography

    



To see more gorgeous photos or to sign up to be a Save the Cherubs model or photographer, visit our web site at http://www.savethecherubs.org

Congenital Diaphragmatic Hernia Research Bill

CHERUBS is very proud to present our Congenital Diaphragmatic Hernia Research Bill to be presented to Congress to help promote more federal funding for CDH research.   With the help of our members, other CDH organizations and the public, we are determined to promote CDH Research to help save the lives of babies born with Congenital Diaphragmatic Hernia.

We are currently searching for bill sponsorship.  If you would like to contact your Congressman or Senator and ask for their support of this bill, please visit http://www.cdhbills.org for more information.


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


In request of a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research

Submitted by CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
3650 Rogers Rd. #290
Wake Forest, NC 27587
919-610-0129
research@cdhsupport.org



A BILL

To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,


SECTION 1. SHORT TITLE.

This Act may be cited as the ‘CDH Research Act of 2010’.


SECTION 2. FINDINGS.


The Congress finds as follows:

(1) Congenital Diaphragmatic Hernia is a birth defect.

(2) Congenital Diaphragmatic Hernia has a rate of occurrence of 1 in every 2500 babies.

(3) Congenital Diaphragmatic Hernia affects approximately 1600 babies each year in the United States.

(4) Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.

(5) The majority of Congenital Diaphragmatic Hernia patients have underdeveloped lungs and/or poor pulmonary function.

(6) Congenital Diaphragmatic Hernia patients often endure long-term complications such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders and developmental delays.

(7) Congenital Diaphragmatic Hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition and hypoxic brain injury.

(8) Congenital Diaphragmatic Hernia has a survival rate of 50%.

(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 2000.

(10) Babies born with Congenital Diaphragmatic Hernia endure extended hospital stays in intensive care with multiple surgeries. Extended hospital stays in some cases have exceeded one year.

(11) Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis.

(12) Congenital Diaphragmatic Hernia is diagnosed in utero in only 75% of cases.

(13) Congenital Diaphragmatic Hernia is treated through mechanical ventilation, heart and lung bypass (Extracorporeal Membrane Oxygenation) machines and surgical repair.

(14) Congenital Diaphragmatic Hernia surgical repair is often outgrown thus leading to reherniation and requiring additional surgery.

(15) Congenital Diaphragmatic Hernia does not discriminate based on race, gender, religion, economic status or lack of prenatal care.

(16) The cause of Congenital Diaphragmatic Hernia is unknown.

(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.

(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.

(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.

(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.


SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.


(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.

(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—

(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.

(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.

(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.

(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.


SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.


(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia

(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—

(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;

(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and

(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

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.