Saturday, February 20, 2010

CHERUBS UK Get-Together on March 7, 2010 in Leicester, England

From CHERUBS UK....

You are warmly invited to attend the

 AGM of Cherubs UK on Sunday 7th March at 2pm

 Venue  Days Inn Hotel Leicester
             Leicester Forest
             East Motorway Services
             Junction 21/21a northbound M!
             LE3 3GB

Tea and coffee will be provided


 The order of the meeting will be as follows

 Welcoming speech by committee member

 Chairpersons report

 Treasurers report


 Question's accepted by the members to the committee?



It is general practice that if you intend to ask questions then you advise us of these questions in advance of the meeting so that we can be sure that we are able to discuss your questions fully on the day.

I do hope that you will join us for an hour or so as it gives us a good opportunity to touch base with our members. Please let me know via email brakha88@hotmail.com or brenda@uk-cherubs.org.uk if you would like to attend so that we have an idea of how many are coming by next Friday

Thursday, February 18, 2010

Prayers & Quotes for February 18, 2010

Prayers & Quotes for February 18, 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:


Cherub Keith H. has reherniated. His surgery repair is scheduled for next week.

Cherub Owain P. has reherniated for a 3rd time...surgery is pending.

Cherub Jim Beau R. is having a VSD repair on 3/9.

Cherub Clodagh D. is having a CDH repair to fix her eventration....surgery date is pending.

Newborn cherub Molly G. is still in the hospital. She is coming off her paralyzers and starting to move and open her eyes.

Cherub Nicole T. is having surgery on March 9th to place growing rods, to help fix her scoliosis.

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 Ian H., due 4/26

Cherub Jayden G., due 3/18

Cherub Jeremiah M., due 3/30

Cherub Mekhai R., due 3/17

Cherub "baby boy" K., due 4/16

Cherub Austin M., due 3/30

Cherub "baby girl" A. due 5/20

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 Ruben A. was born 2/17 at 10:40am and grew his wings at 3:15pm. Please keep this precious family in your thoughts and prayers in the days to come.

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.


Today’s Quotes:

"Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity. " -Henry Van Dyke

"Life is a great big canvas, and you should throw all the paint on it you can."
-Danny Kaye

"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

"My attitude is that if you push me towards something that you think is a weakness, then I will turn that perceived weakness into a strength." - Michael Jordan

Friday, February 12, 2010

Congenital Diaphragmatic Hernia Awareness Ribbon - http://www.cdhawarenessribbon.org



Official Congenital Diaphragmatic Hernia Awareness Ribbon



Congenital DIaphragmatic Hernia Awareness RibbonThe official CDH Awareness Ribbon is recognized in 38 countries and all 50 states and by many non-profit organizations, groups and hospitals.   It was voted on by CDH parents, is trademark and copyright free and is not used by any other cause.  

The Congenital Diaphragmatic Hernia Awareness Ribbon is as unique as the babies born with CDH.  The awareness colors for birth defects are pink and baby blue, so they were incorporated into our ribbon.   The official Congenital Diaphragmatic Hernia Awareness Ribbon is pink, baby blue and light yellow, with white clouds to represent the 50% of babies born with CDH who do not survive.  It is original, not used by and doesn't infringe upon any other cause - yet, it also signifies that CDH is a birth defect. The baby colors truly keep the meaning of the cause - helping CDH babies - close to heart.

Christian LeRoy RayThis is the Congenital Diaphragmatic Hernia Awareness Ribbon recognized by the members of the Alliance of Congenital Diaphragmatic Hernia Organizations. Is it recognized by CHERUBS, the world's first and largest CDH organization with over 3000 members in 38 countries. It is the ribbon associated with the Congenital Diaphragmatic Hernia Research Study and the CDH Research Congressional Bill.   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.

If you have a child born with CDH, make sure to request a free personalized Congenital Diaphragmatic Hernia Awareness Ribbon.


Kasey James Colvin

CDH Awareness Ribbons


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.

CDH is as common as Cystic Fibrosis and Spina Bifida but there is little research and awareness and virtually no media coverage.   At CHERUBS, e are working hard to change that.

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 www.cdhsupport.org






Some of the wonderful items available on Cafepress with personalized Congenital Diaphragmatic Hernia Awareness ribbons:



Dylan Jasmin CDH Awareness Ribbon Tote BagLiviana Grace Price CDH Awareness Ribbon Teddy BeaGuilianna Marie Paradiso CDH Awareness Ribbon OrnaFrederico Contu CDH Awareness Ribbon Flip MinoAlexander Easley CDH Awareness Ribbon Green T-ShirRaymond "Drew" Lewallen CDH Awareness Ribbon Note Samuel Corbett CDH Awareness Ribbon Messenger BagJayden Valasek CDH Awareness Ribbon Jr. Ringer T-SAiden Michael Kern CDH Awareness Ribbon Sticker (BMason Linehan CDH Awareness Ribbon Maternity T-ShiCooper Weston CDH Awareness Ribbon CapAlyssa Kessner CDH Awareness Ribbon Ceramic TravelAiden Michael Kern CDH Awareness Ribbon Baseball JLogan Wagner CDH Awareness Ribbon MagnetMarco Pena CDH Awareness Ribbon Women's TracksuitJacob Vignes CDH Awareness Ribbon BibMason Linehan CDH Awareness Ribbon Kids Dark T-ShiAlyssa Kessner CDH Awareness Ribbon Women's Dark TElijah Harkin CDH Awareness Ribbon Dog T-ShirtFaith Miles CDH Awareness Ribbon Wall ClockDevin J. Breneman CDH Awareness Ribbon Organic BabElijah Harkin CDH Awareness Ribbon MugEthan William James Marchand CDH Awareness Ribbon Jack Jensen CDH Awareness Ribbon BBQ ApronCooper Weston CDH Awareness Ribbon Throw PillowGrace Dill CDH Awareness Ribbon Large MugGregory Zion Couret CDH Awareness Ribbon JournalCooper Weston CDH Awareness Ribbon Ringer TElijah Harkin CDH Awareness Ribbon Kids Baseball JCooper Weston CDH Awareness Ribbon Sigg Water BottEllianna Nevaeh CDH Awareness Ribbon Mousepad





Congenital Diaphragmatic Hernia - CDH HOPE Totebag Program - http://www.cdhhope.org


 
CHERUBS H.O.P.E Totebag Project
(Helping Other Parents Expecting)





CDH Tote bag


Delivery of the first CDH HOPE Totebag to the Hobbs family at Duke University Medical Center



CDH HOPE Totebag Project

CHERUBS H.O.P.E. (Helping Other Parents Expecting) Totebag Program assists families expecting babies born with Congenital Diaphragmatic Hernia by providing them with much needed free information and support items through a community project in which all CDH families can participate and honor their children while helping new families affected by Congenital Diaphragmatic Hernia.

Donated items are collected by our members, CDH families and friends and put together into totebags by volunteers.  Totebags are then mailed to families who are expecting babies born with CDH or who have newborns still hospitalized and battling Congenital Diaphragmatic Hernia.

Congenital Diaphragmatic Hernia (CDH) is a devastating birth defect that affects 1 in every 2500 babies.   CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.  The cause is not known.  

50% of babies diagnosed with CDH do not survive.   Of those that do survive, sometimes long hospitalizations and other issues occur.  It is incredibly important for CDH families to have accurate information of all the treatments for Congenital Diaphragmatic Hernia so that parents can make informed decisions for the babies' care.  Items included are a CDH Awareness Ribbon totebag, personal care items for baby and information for the parents and family.   Our CDH Baby Book is over 200 pages of valuable CDH information and advice.

Over 100 new and expectant CDH parents join CHERUBS each year.   This project was created for them, to help them through the first few weeks and months in dealing with Congenital Diaphragmatic Hernia. 

These bags will ONLY go to families affected by Congenital Diaphragmatic Hernia.   They will be sent out  to families in the United States as they join CHERUBS membership.

For more information on CDH and CHERUBS, you can visit our site at http://www.cdhsupport.org

If you would like to make a tax-deductible donation of items or money, you can mail it to:

CHERUBS
3650 Rogers Rd #290
Wake Forest, NC 27587




CDH Totebag

 
Project Participants:   All CDH families and friends can participate in this project to honor your cherub and to help other CDH famililes.  Each donated item is labeled with the donor's name and the name of the cherub honored.   No member is required to fill entire bags or hold events.  Simply donate what you can, when you can!  



Congenital Diaphragmatic Hernia Tote bag

Wednesday, February 10, 2010

Congenital Diaphragmatic Hernia Hospitals - http://www.cdhhospitals.org

CHERUBS new web site:


includes: our Adopt A Hospital Program, a list of CDH clinics, ECMO Center, Fetal Center and members of the International CDH Study Group


CDH Adopt A Hospital Program

CHERUBS Adopt A Hospital Program

Provide Information & Support To Families Affected By Congenital Diaphragmatic Hernia



CDH Hospital Adoption Kit


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.

How does it work?  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:




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 CHERUBS H.O.P.E. 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.

Your donation is tax-deductible!





 

Congenital Diaphragmatic Hernia Awareness Day






Petition against the trademark on "Congenital Diaphragmatic Hernia Awareness"

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

Over 6500 signatures of CDH families, doctors, nurses and friends, way to go everyone! Thank you so much for caring about these children and doing what's right. If you haven't signed yet, please do!   Or just take a look at the comments on the signatures or read the blog to learn more about this trademark.

Because of this trademark, CHERUBS does NOT participate in "Congenital Diaphragmatic Hernia Awareness Day" - it's used as "evidence" of why 1 group should own CDH awareness.  It is also why we do not use turquoise.

This is a decision CHERUBS (and several other groups) made to protect our organization and members and to help fight for the right to raise Congenital Diaphragmatic Hernia Awareness freely, without drama or lawsuits or other nonsense that have no place in the CDH community.   It is a decision to take a stand against it and not promote it.

We fully encourage all CDH families to raise awareness in as many ways as possible and will continue to fight for your rights to do so.

This is the ONLY trademark on record at the USPTO on awareness of a health issue.  There are some trademarks on events (for example - "Birth Defects Awareness Day" by the March of Dimes) - but none on generalized awareness of a cause.  Imagine a trademark on "Breast Cancer Awareness" or "Autism Awareness" - it would  never happen.  But because, ironically, there is no awareness on CDH, the attorney at the United States Patent & Trademark Office just approved the application without any research on what Congenital Diaphragmatic Hernia is.   CHERUBS, backed by many other CDH groups, with the blessings of 1000's of CDH families and researchers and with help from 4 pro-bono attorneys - filed a petition to cancel this trademark that is currently in proceedings.   You can read all about it at:

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

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

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


Soon, we will release our Congenital Diaphragmatic Hernia Awareness Congressional Bill - to protect all causes, birth defects and diseases from having awareness hindered by corporate trademarks.   

While we fully encourage all CDH families to raise awareness in as many ways as possible - CHERUBS does not participate or promote in any trademarked activities such asCongenital Diaphragmatic Hernia Awareness Day

 

CDH Awareness Shop - http://www.cdhawarenessshop.org

CHERUBS has been selling CDH Awareness items on-line since 1998, as one of the first non-profits to use PayPal and Cafepress.   With our new site, we have upgraded to a whole CDH Awareness Shop:

http://www.cdhawarenessshop.org

CDH Awareness Shop


Welcome to the home of the Official Congenital Diaphragmatic Hernia Awareness Ribbon and 1000's of official CDH Awareness Items.    CHERUBS CDH Awareness items have been available on-line since 1998, raising awareness in 38 countries making our stores the oldest and largest CDH Awareness shops in the world.    Money raised in these shops goes to help families affected by Congenital Diaphragmatic Hernia through our CDH Research, CDH Awareness and CDH Family Support Funds.

From books, bracelets, ribbons and onesies to totebags, skateboards, awareness walk items - we have it all and more!

To keep prices low we use a variety of manufacturers and also volunteers to create these items.  Some are sold directly by CHERUBS, some by stores such as Cafepress and Zazzle.



CHERUBS CDH Awareness Ribbon Items
CHERUBS CDH Awareness Ribbon Items
Official CDH Awareness Ribbon
Official CDH Awareness Ribbon
Ellianna Nevaeh CDH Awareness Ribbon Mousepad
Personalized CDH Awareness Items
I Run To Raise CDH Awareness
Awareness Event Items
Congenital Diaphragmatic Hernia Awareness Kit
CDH Awareness Kits
Congenital Diaphragmatic Hernia Hospital Kit
Adopt A Hospital CDH Kits
Congenital Diaphragmatic Hernia Awareness Ribbon Buttons
CDH Awareness Ribbon Buttons
Congenital Diaphragmatic Hernia Awareness Bracelets
CDH Awareness Bracelets
Congenital Diaphragmatic Hernia Awareness Bumper Sticker Magnet
CDH Awareness Bumper Sticker Magnets
CDH Awareness Ribbon Christmas Ornaments
CDH Holiday Ornaments
CDH Baby Book
CDH Baby Book
Stories of CDH Families
Stories of Cherubs Books
CDH Awareness Calendar
CDH Cherubs Calendars
CDH Awareness Totebag
CDH Totebags
CDH Awareness Posters & Journals
CDH Awareness Posters & Journals
Congenital Diaphragmatic Hernia Educational Items
Congenital Diaphragmatic Hernia Educational Items
I Love C.D.H. Research
I Love C.D.H. Research
CDH Logo Items
CDH Logo Items
CDH Wings Logo
CDH Wings Logo
CDH Awareness Victorian Logo
CDH Awareness Victorian Logo
CDH Awareness Flourish Logo
CDH Awareness Flourish Logo
Raphael's Cherub On Board Maternity T-Shirt

Cherub On Board Maternity T-Shirt
CDH Superhero Logos
CDH Superhero Logos
Holiday Items
Holiday Items
"Ask Me About CDH" Text
"Ask Me About CDH"
CDH Anatomy Lesson
CDH Anatomy Lesson
Anatomy of a Cherub
Anatomy of a Cherub
CHERUBS Logo Items
CHERUBS Logo Items
CHERUBS Pastel Logo
CHERUBS Pastel Logo
"I Help CHERUBS" for Medical Professionals
"I Help CHERUBS" for Medical Professionals
CHERUBS Conferences & Get-Togethers
CHERUBS Conferences & Get-Togethers
CHERUBS Angel Ball
CHERUBS Angel Ball
Drawings by Cherubs
Drawings by Cherubs

Clothing






Some of the wonderful items available on Cafepress with personalized Congenital Diaphragmatic Hernia Awareness ribbons:




Dylan Jasmin CDH Awareness Ribbon Tote BagLiviana Grace Price CDH Awareness Ribbon Teddy BeaGuilianna Marie Paradiso CDH Awareness Ribbon OrnaFrederico Contu CDH Awareness Ribbon Flip MinoAlexander Easley CDH Awareness Ribbon Green T-ShirRaymond "Drew" Lewallen CDH Awareness Ribbon Note Samuel Corbett CDH Awareness Ribbon Messenger BagJayden Valasek CDH Awareness Ribbon Jr. Ringer T-SAiden Michael Kern CDH Awareness Ribbon Sticker (BMason Linehan CDH Awareness Ribbon Maternity T-ShiCooper Weston CDH Awareness Ribbon CapAlyssa Kessner CDH Awareness Ribbon Ceramic TravelAiden Michael Kern CDH Awareness Ribbon Baseball JLogan Wagner CDH Awareness Ribbon MagnetMarco Pena CDH Awareness Ribbon Women's TracksuitJacob Vignes CDH Awareness Ribbon BibMason Linehan CDH Awareness Ribbon Kids Dark T-ShiAlyssa Kessner CDH Awareness Ribbon Women's Dark TElijah Harkin CDH Awareness Ribbon Dog T-ShirtFaith Miles CDH Awareness Ribbon Wall ClockDevin J. Breneman CDH Awareness Ribbon Organic BabElijah Harkin CDH Awareness Ribbon MugEthan William James Marchand CDH Awareness Ribbon Jack Jensen CDH Awareness Ribbon BBQ ApronCooper Weston CDH Awareness Ribbon Throw PillowGrace Dill CDH Awareness Ribbon Large MugGregory Zion Couret CDH Awareness Ribbon JournalCooper Weston CDH Awareness Ribbon Ringer TElijah Harkin CDH Awareness Ribbon Kids Baseball JCooper Weston CDH Awareness Ribbon Sigg Water Bott