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.

 

CDH Awareness In The News - ABC2 News in Maryland

http://www.abc2news.com/news/local/story/Raising-Awareness-For-Rare-Disease/gNWbJ7dZEEui7QRclGlXGg.cspx

Brooke Sroka is a 2 year old CDH survivor in Maryland who participated in our Save the Cherubs campaign with her photographer mom, Mandy Sroka.   The media was alerted to the campaign and they chose to interview the Srokas, who did an AMAZING job in raising Congenital Diaphragmatic Hernia Awareness!!!

WTG Sroka family!!!!!!!! :)

Register Your Hotel Room For The 2010 CDH Conference By April 13th!

http://www.cherubsconference.org

Deadline to register for the hotel discount is TOMORROW, April 13th! You can still register later at full price.

This is going to be an AMAZING conference for CDH families with so much info and support and it's close to Disney and Universal!  What better vacation is there than that? :)

 

CHERUBS 2010 International Member Conference

May 13 - 16, 2010
Orland, Florida

Summer Bay Resort Holiday Inn Express

Orlando, Florida

About Our CDH Conference:

Expect to learn a lot about Congenital Diaphragmatic Hernia!   Meet new friends, see old friends and participate in research for various hospitals.  

For safety and privacy of our members, you MUST be a member of CHERUBS to attend.  You may register for free at http://www.cdhsupport.org/members

Children are welcome and babysitting services will be provided during conference hours.   Volunteer babysitters are needed and all parents who request babysitting are obligated to donate a minimum of 1 hour of volunteer time per child to help out.

The hotel offers free breakfast and shuttle to and from the amusement parks.

Families are responsible for all other meals and all transportation, accomodations and entertainment.

CHERUBS does not charge a conference fee.

Many families of survivors are eligible for grants to cover travel expenses to medical conferences.  Ask your child's social worker for more information.

Registration:

Make sure to register with us so that we can expect you!   Registration deadline is May 1, 2010.

CHERUBS has a block of 20 rooms reserved at a discount rate at the Summer Bay Resort Holiday Inn Express.   They are available on a first come, first serve basis.    To book at $65.00 per night, you must reserve a room by April 13th.

If you are coming alone and would like to share a room with another member, visit our forums to find a roommate.

Conference Schedule:

Thursday, May 13, 2010

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

Friday, May 14, 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

Saturday, May 15, 2010 - CDH Research

8:00 am - 11:00 am - Guest Speakers On Current CDH Research Studies

8:00 am - 9:00 am  - Meaghan Russell and Mauro Longani from Mass General

9:00 am - 10:00 am  - Speaker Information coming soon!

10:00 am - 11:00 am  - Speaker Information coming soon!

11:00 am - 12:00 pm  View Research Booths, Sign up for CDH Research Studies

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 disccussion on how families can raise CDH Awareness in honor and in memory of individual cherubs.

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