Monday, September 12, 2011

Have you signed the CDH Research Petition? Written to your Congressmen? VERY easy to do!



Congenital Diaphragmatic Hernia Research Bill
In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.

CDH affects 1600 babies in the United States every year, with a 50% mortality rate.  It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth.   The cause of Congenital Diaphragmatic Hernia is not known.   There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida.   More research funds are desperately needed and we are appealing to the United States government to help these babies.

  1. Look Up Your Congressmen To find his / her mailing address
  2. Download Letter to Send To Your Senator / Congressman
  3. Include The CDH Research Bill and a photo of  your cherub
  4. Sign the CDH Research Bill petition and ask others to sign as well!



 
Congenital Diaphragmatic Hernia Research Congressional 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 2011’.


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.

2011 CHERUBS Masquerading Angels Ball

2011 CHERUBS Masquerading Angels Ball


October 22, 2011
6:00 pm - Midnight

Hampton Inn & Suites
(near Raleigh-Durham Airport at Brier Creek)
8021 Arco Corporate Drive
Raleigh , NC 27617





Our 2010 Masquerading Angels Ball was a success!!!


Formal Charity Masquerade Ball
2011 Sponsorships now available!


Masquerade Ball




 

Come join us or a magical night for a good cause.  Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember.

Money raised from this event will go to CHERUBS to fund services to further help families of babues born with Congenital Diaphragmatic Hernia.  CHERUBS is a 501(c)III international children's charity.

Attire:  Our FORMAL  masquerade ball encourages men to wear tuxedos and women to wear floor-length gowns.  FORMAL period costumes are welcome.   Masks are required, some will be provided.   Not acceptible; typical Halloween costumes, short dresses, street clothes and scary masks.

Tickets:  $50.00.  Tickets include entry to event, casino, auction, ballroom.  It also includes entertainment, hors d'oeuvres, drinks,1 bar ticket, 2 casino chips.    

Age Requirement:  You must be 21 years old or older to attend.   CHERUBS reserves the right to refuse ticket sales when necessary.

Master of Ceremonies:  Bob the Blade from 96 Rocks

Special Guests:  Miss Raleigh, actress and model, Wendy Petty and Miss Durham County, Jacquetta Taborn

Live Band:   Stone Age Romeos

Casino:   Take a spin on the roulette wheel or try your hand at blackjack in our Casino Lounge.

Silent Auction:   Come browse our auction items donated by celebrities, local artists, local businesses and members of the charity.

Photographs:   Have your formal portrait taken, a reminder of a wonderful night.   Taken by Jim Shaw Photography.



photo by Jim Shaw Photography


Formal Charity Masquerade Ball

2011 Sponsorships now available!







RSV and Congenital Diaphragmatic Hernia

(repost from 2010)

We are very grateful to Christopher Barry, PA-C (Jeffers, Mann & Artman Pediatrics,  CDH dad) and Kathy Hampton (MedImmune) for gathering information for CHERUBS on RSV.

It is that time of year again to educate yourselves and protect your cherubs from RSV.  RSV can be especially deadly to CDH babies, whose lungs are already compromised.

PDF's compliments of  www.specialdeliveryhandlewithcare.com

Click on images to view full-size.





CHERUBS North Carolina Get-Together Picnic - September 24, 2011 in Winston-Salem, NC

CHERUBS NC Picnic!!!

Mark the date!!! We have a picnic for NC CHERUBS!!!!!





Date: Saturday September 24, 2011
Time: Afternoon - 2-6 pm?
Place: Miller Park Shelter #2
400 Leisure Lane
Winston-Salem, NC 27103

Food: Potluck - bring your own favorites
Grill is available

There is a playground near this shelter as well.
Also Kendrah is bring bottled water and ice.


Directions:

From I-40 E:
Business 40 E
Exit 3A Knollwood Street
Turn Right onto Knollwood
Turn Left onto Queen Street
Miller Park & Parking lot is on your right

From I-40W
Business 40 W
Exit 3A Knollwood Street
Turn Left onto Knollwood
Turn Left onto Queen Street
Miller Park & Parking lot is on your right


Mount Snowden Climb - June 30, 2012 in Gwynedd, Wales, UK

The very first CDH Mountain Climb Fundraiser in memory of Faith Emily Marshall-Elkins

Mount Snowden Climb - June 30, 2012 in Gwynedd, Wales, UK

http://www.firstgiving.com/fundraiser/laranorth/mountsnowdonclimb 



Mount Snowden is the highest mountain in Wales, at an altitude of 1,085 metres (3,560 ft) above sea level, and the highest point in the British Isles outside Scotland. It is located in Snowdonia National Park (Parc Cenedlaethol Eryri) in Gwynedd, and has been described as "probably the busiest mountain in Britain".[3] It is designated as a national nature reserve for its rare flora and fauna.

CDH Ornaments Sale - PHOTOS NEEDED BY NOVEMBER 5th!


This year instead of using drawings by cherubs for the ornaments, we are using Save the Cherubs photos! ALL Christmas / Holiday photos submitted will be used - 1 per cherub please.

Go to http://www.savethecherubs.org for information on the types of photos we will be using.

Siblings are welcome to substitute for cherubs in heaven.

MUST be holiday photos! For example; winter scenes, visiting Santa, in front of a tree, etc. All photos MUST use wings! And you must submit model paperwork as well. Wings and paperwork on the Save the Cherubs site.

Photos will also be used in posters for the campaign!

Submit photos to dawn.m.williamson@gmail.com with CDH Ornaments in the subject line by November 5th.

CHERUBS 2011 Holiday Vendor Show - November 13, 2011 in Wake Forest, NC

CHERUBS 2011 Holiday Vendor Show

November 13, 2011 ~  2:00 pm - 6:00 pm
Millroom At The Factory on South Main St.
Wake Forest, NC




CDH Christmas Vendor ShowOn November 13th at the Factory in Wake Forest, CHERUBS will hold our first annual Christmas Vendor Show!!!!    It will feature local vendors offering a variety of holiday gift items.    It will also include Angel Trees - artificial, pre-lit Christmas trees sponsored and decorated by local charities to be auctioned off for the those charities.  Special visit by Santa Clause, who will post for photos with children for a donation to CHERUBS.


FREE ADMISSION TO THE PUBLIC.



Our Vendors




CDH Christmas Vendor ShowLocal Charities
  • Download a Angel Tree Application Form
  • $100 per pre-lit, artifical tree
  • Each tree theme must be unique and pre-approved by CHERUBS
  • Silent auction bid starts at $100, all proceeds go to your charity
  • Tree must be fully decorated by 1:30 pm
  • Tree must be taken down and delivered to auction winner
     

Trick-or-Treat Change for CHERUBS - Now until October 31, 2011 ANYWHERE

Trick-or-Treat Change for CHERUBS




Starting now to October 31st we are encouraging members to empty their piggy banks, pockets and coin jars to college change to help us fund CDH research.
 
On Halloween we encourage kids to dress as cherubs and trick-or-treat for change instead of candy. It's healthier and for a good cause!

Collect all the change and cash it in to the bank to send in a check in honor or in memory of your cherub!  



The Charley Stanfield-Maher Ball - October 29, 2011 in Manchester, England

The Charley Stanfield-Maher Ball in honor of Charley Stanfield-Maher

Saturday, October 29 at 7:00pm - October 30 at 1:00am
Denton Golf Club



Charley's Angels second annual Ball. Following on from the huge success of last years black tie ball we will be having a halloween themed ball this year. Tickets are being designed as we speak but we can take details of interest initially. We already have several of last years guests asking for tickets so don't leave it too late.

Come join us & help Raise plenty of Awareness of Congenital Diaphragmatic Hernia. 

CDH Horse Racing Night - October 15, 2011 in Aberdeen, England

CDH Horse Racing Night in memory of Alfie Warchol

https://www.facebook.com/event.php?eid=245923455430944


We are holding a fundrasing Horse Race night in aid of
CHERUBS - Congenital Diaphramatic hernia , Research , awareness and support , in memory of Alfie John Black


A CHARITY VERY CLOSE TO OUR HEARTS !
As you may know we lost our baby boy Alfie John to CDH in March and would like to raise money to help this great charity !

TICKETS COST £5
We have limited numbers so tickets wil be sold on first come first serve

We are holding an interactive Horse race night with plenty of audience participation using race mats and dice ! NO VIDEOS ! 


Will be a good night

There will be 6 sponoered races during the evening and horses for the final 7th race will be auctioned on the night . 


There will also be a raffle and food by Scrumdiddly Umptious .

Sponsored Races
The horses for these races are on sale for £5 when u buy your ticket the wining horse from each race will win a bottle of spirits kindly donated by the sponsors !
There are only 36 horses for sale so hurry !
There will also be betting on the night !

Auctioned race
Horses for the final race will be auctioned on the night befor the final race .
The winning owner will receive 50% of the total auction prices for all the 6 horses in the last race .

IF YOU WOULD LIKE TO PURCHASE TICKETS ,BUY A HORSE OR DONATE A RAFFLE PRIZE OR HAVE ANY FURTHER QUERIES PLEASE CONTACT
DONNA - 07754111264

If you would like to find out more about CHERUBS feel free to visit there web site www.cdhsupport.org/



Braiden's Bowl-A-Thon - September 25, 2011 in Hemet California

http://www.facebook.com/event.php?eid=208160785913729

Join us for a Bowl-A-Thon in memory of Braiden Shiloh Anthony.

Bowling will be $25 per person for 2 hours (includes shoes and snacks)


50/50 Raffle. Awesome prizes, $2 a ticket!


All proceeds will go to CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support!

www.cdhsupport.org


Please come to help raise CDH awareness!!


Hope to see you there!!!