Friday, May 31, 2013

Combined Federal Campaign Charity


CHERUBS is now a member of the Combined Federal Campaign!

If you are, or you know someone, who is in the military or works for the U.S. government please choose CHERUBS as your charity of choice this October!


Our CFC number is 31232.


Did you know that CFC charities have to undergo a strict application process, including an independent audit and low overhead costs? This is another great way for our charity to raise money, raise funds and show the community that we are dedicated to being the best charity possible! We are very excited to be a part of the CFC and are currently the only CDH charity who is a member!!!

Tuesday, May 21, 2013

CHERUBS Partners with Groupon Grassroots for the HOPE Totebag Initiative

CHERUBS Partners with Groupon Grassroots for the HOPE Totebag Initiative




CHERUBS Partners with Groupon Grassroots for the HOPE Totebag Initiative
to provide totebag care packages to families either expecting a child with a congenital diaphragmatic hernia (CDH) or currently have a child in the hospital with CDH.
Chicago, IL – Today CHERUBS and Groupon Grassroots (http://grassroots.groupon.com), the philanthropic arm of Groupon, announce the launch of a local campaign to raise much needed funds to support the HOPE Totebag project.
The HOPE Totebag campaign will be available on the Chicago, IL Groupon Grassroots page beginning on 23, May and running through 29, May. Utilizing Groupon Grassroots’ collective action model, Groupon subscribers can pledge support for the Hope Totebag initiative in increments of $10, with each $50 covering the cost of the totebag care package for 1 family.  
“We’re excited to leverage the collective action model of Groupon Grassroots to raise support for the HOPE Totebag project,” said Neil Rubenstein, Illinois Rep for CHERUBS. “We look forward to creating new awareness for CHERUBS as one of the local organizations in Chicago to be featured on Groupon Grassroots.”
One hundred percent of the Groupon Grassroots campaign proceeds will be used to provide much needed funding to keep this project going.  It costs CHERUBS approximately $50 in product and postage to mail each totebag.  Typically, CHERUBS mails about 30 totebags per month.  The totebags contains items such as blankets, disposable camera, gas cards, and other welcome items that parents often don’t think about before a lengthy NICU stay.  CDH babies can be hospitalized in the NICU for 6 months or longer. 
CHERUBS currently has over 4,200 members in all 50 states and in over 60 countries.  1 in every 2500 pregnancies results in a CDH diagnosis.  Unfortunately, there are over 52,000 children diagnosed with CDH every year around the world.  There is only a 50% survival rate for children born with this birth defect.  
###
About CHERUBS
CHERUBS is the world's first, oldest, and largest CDH non-profit organization.  CHERUBS is truly a grassroots organization - CDH families creating something out of nothing when there was no other CDH group, information and services in 1995.  CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information.  For more information on CHERUBS, visit http://www.cherubs-cdh.org
Groupon Grassroots, launched in July 2010 in Chicago as G-Team, features local campaigns nationwide, enabling Groupon followers to do good, have fun, and make a real impact in their communities. Groupon Grassroots uses collective action to gather support for worthwhile causes and produce tangible results for local organizations. To learn more about Groupon Grassroots and how to become a featured organization, visit http://grassroots.groupon.com. To subscribe to Groupon, visit http://www.groupon.com.
Press Contacts:
CHERUBS
Neil Rubenstein
847.530.6070
Groupon
Erin Yeager
312.999.3434


Written by Neil Rubenstein

2013 so far for CHERUBS








2013 so far for CHERUBS:

* Senate Resolution for April 2013 as National CDH Awareness Month passed UNANIMOUSLY
* House of Resolution for April 2013 as National CDH Awareness Month currently in committee with new Co-Sponsors
* Capitol Hill visit for CDH Research Fund with plans underway!
* April 19th Marches and Events in Washington DC, Chicago, NYC, Seattle, Portland, Peoria, St Louis, Gainesville, Philadelphia, Denver, Phoenix, Las Vegas, the UK, Brazil
* Over $20,000 raised for CDH Research
* Over 12,000 Facebook Fans
* Over 4400 members
* Represented the CDH Community at the 2013 American Pediatric Surgical Association conference
* Represented CDH families at the 2013 DHREAMS meeting
* New FB app for our CDH Family Forums
* New members to our Medical Advisory Board
* MANY local events and fundraisers
* New weekly e-newsletter
* Dozens of TV and newspaper interviews
* 6 new videos
* New CDH Fundraising Kit
* Over 150 totebags sent out to new and expectant CDH families
* Nominated for a Health Advocacy Award and won several awards for being an outstanding non-profit organization
* We have visited many cherubs and families in the hospital and unfortunately gone to funerals as well. We are not just an "on-line support group", we are working hard to make a REAL difference not just in funding research and raising awareness but by being there for the families that need us.

Upcoming still for 2013:

* First ever joint International Medical & Family Conference this July in Boston with attendees from 5 countries so far
* Speaking at the CDH Community at the 2013 International CDH Study Group Conference in Holland in June
* 2 Scholarships for High School Seniors (Cherubs or siblings)
* MANY local get-togethers, picnics and fundraisers
* 2013 Stories of Cherubs Book featuring over 500 cherubs
* 2013 CDH Magazine
* New web site
* On-line CDH RESEARCH DATABASE!
* 2013 Masquerading Angels Ball in Raleigh in October
* 2013 CDH Research Raffle
* 2013 CDH Research Grant Facebook Contest
* UK CDH Ball
* UK Member Get-Together

And wait until you see what we're doing in 2014!!!

What is Congenital Diaphragmatic Hernia?

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000.

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. 1600 babies are born with CDH every year in the United States. Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Like what we do? Please share this status!

Please donate to help us fund all of this and so much more! Donate via the tab on our FB page or at http://www.cdhdonations.org/

Contact Tracy about volunteering at volunteer@cherubs-cdh.org

Contact Melissa about holding a fundraiser at mlarrison@cherubs-cdh.org

Learn more about CHERUBS at http://www.savethcherubs.org/




Monday, May 20, 2013

CHERUBS 2013 CDH Scholarships



Announcing the first CDH College Scholarships at CHERUBS!  

Two $1000 scholarships will be awarded this year in memory of cherub Oz Kidd-Ward.


Applications are accepted each year between March 1 and June 24th and must be accompanied by the following applicable items: 

·      High school transcript(s) or Recent Report Card with GPA 
·      College Acceptance Letter(s)
·      Two letters of recommendation.  Letters must be dated within the last three months.

Rewards are granted on merit without regard to race, religion, creed, sex, national origin or disability status.  All applicants must be a current member of CHERUBS or have a parent that is a registered member of CHERUBS.  The CHERUBS CDH Scholarship is not available to children of members on the CHERUBS Executive Board or the CHERUBS Parent Advisory Board (CPAB).  Winner(s) will be announced at the International Congenital Diaphragmatic Hernia Conference on Wednesday, July 10, 2013, in Boston, MA


These scholarships are made possible by donations made in memory of  
Osmund "Oz" Wyatt Kidd-Ward.

Thursday, May 9, 2013

2013 Congenital Diaphragmatic Hernia Awareness



Current states that have proclaimed April 19th a day to raise Congenital Diaphragmatic Hernia Awareness as of May 8th:

1. Alabama
2. Arizona
3. Arkansas
4. Connecticut
5. Colorado
6. Georgia
7. Hawaii
8. Idaho
9. Illinois
10. Indiana
11. Iowa
12. Kentucky
13. Louisiana
14. Maryland
15. Massachusetts
16. Minnesota
17. Montana
18. Nevada
19. New Mexico
20. New York
21. North Carolina
22. Ohio
23. Oklahoma
24. Oregon
25. Pennsylvania
26. Rhode Island
27. South Carolina
28. South Dakota
29. Tennessee
30. Texas
31. Vermont
32. Virginia
33. Washington
34. Wyoming
35. Guam

Cities & Towns:

1. Chicago, IL
2. Raleigh, NC
3. Wake Forrest, NC
4. Everett, MA
5. Rowland, TX
6. Vero Beach, FL
7. Gainsville, FL
8. Providence, RI
9. Boston, MA
10. Peoria, IL
11. Huntsville, AL
12. Newbedford, MA
13. Saratoga Springs, UT
14. City of Salt Lake, UT
15. Nashville, TN
16. Wheeling, IL
17. Buffalo Grove, IL
18. Pittsburg, PA
19. Baltimore, MD
20. Cleveland, OH
21. Fortworth, TX
22. Boonsville, MS
23. Jumpertown, MS
24. North Wilksboro, NC
25. Manahawkin, NJ
26. Portsmouth VA
27. Fresno, CA
28. Mebane, NC
29. Lakeville, MN
30. Colorado Springs, CO
31. Morrisville, NC
32. North Richland Hills, TX
33. Hickory Hills, IL
34. Mesa, AZ
35. Tinley Park, IL
36. Tonganoxie, KS
37. Orland Park, IL
38. Dallas, TX
39. Aurora, IL
40. Baltimore, MD
41. Prattville, AL
42. Siloam Springs, AR
43. Selma, AL
44. Crest Hill, IL
45. Cedar Hill, TX


Senator Jeff Sessions introduced Senate Resolution 85 to proclaim April 2013 "National Congenital Diaphragmatic Hernia Awareness Month", co-sponsored by Sen. Ben Cardin.  It was passed unanimously in the United States Senate on March 20, 2013.

On April 9, 2013 Rep. Martha Roby (R-AL)  introduced H. Res. 114 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH.  5more Representatives have since joined as Co-Sponsors:

Please ask your Congressmen to support the companion Resolution H Res 114 in the United States House of Representatives.

Go here to track the progress of the House Resolution -
http://www.govtrack.us/congress/bills/113/hres144#

Download H Res 114 -
http://www.govtrack.us/congress/bills/113/hres144/text

Senate Res. 85 - http://www.govtrack.us/congress/bills/113/sres85

Look Up Your Congressmen to find his / her mailing address - http://www.house.gov/writerep/






Wednesday, May 8, 2013

2013 CDH Conference in Boston, CALL TO ACTION on Congressional Resolutions, New CDH Forums Facebook



Join us to raise CDH Awareness on April 19th!

 

2013 Congenital Diaphragmatic Hernia Conference


Joint Medical and Family CDH Conference Co-Sponsored by CHERUBS, MassGeneral CDH Genetic Study Lab and Boston Children's Hospital

July 9-13, 2013 in Boston, MA
 


Join us in Boston, Massachusetts for the first ever joint Medical and Family conference for CDH!

The Inn at Longwood Medical
342 Longwood Avenue
Boston, MA 02115

 
  • Families already registered from 3 continents. 
  • Doctors submitting research abstracts for presentation. 
  • The first ever joint CDH Medical and Family Conference
  • The first ever CDH Medical Professional Panel assembled to answer family questions.  
  • Participate in CDH Research
  • Walk in the Parade of Cherubs
  • Half-day meetings so you can enjoy the local attractions
  • Meet other families and participate in round-table discussions
  • ALL CDH families and medical professionals are welcome
  • The largest CDH Conference in history!

Click here to learn more and to register for this amazing event!  http://www.cdhconference.org

Download the Prospectus - http://www.cherubs-cdh.org/conference/2013CDHConference.pdf
 
 
CDH Boston Genetic LabCHERUBSBoston Children's Hospital


CALL TO ACTION

Votes need for H Res 114 for Congenital Diaphragmatic Hernia Awareness Month in the United States House of Representatives

On March 20, 2013 the United States Senate unanimously passed S. Res. 85 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH.

Senator Jeff Sessions speaks on S Res 85 and H Res 144 for Congenital Diaphragmatic Hernia Awareness
(Click to watch the video)

Senator Jefferson Sessions (R-AL) formally introduced the Resolution, co-sponsored by Senator Benjamin Cardin (D-MD).

On April 9, 2013 Rep. Martha Roby (R-AL) andRep. George Holding (R-NC) introduced H. Res. 114 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH


Please ask your Congressmen to support the companion Resolution H Res 114 in the United States House of Representatives.

Go here to track the progress of the House Resolution -
http://www.govtrack.us/congress/bills/113/hres144#

Download H Res 114 -
http://www.govtrack.us/congress/bills/113/hres144/text

Senate Res. 85 - http://www.govtrack.us/congress/bills/113/sres85

Look Up Your Congressmen to find his / her mailing address - http://www.house.gov/writerep/

Call and ask to meet with your Congressman or their health aide in Washington DC or your state.

Write a letter or e-mail and tell them your story and ask them to vote for H. Res. 114

April 19, 2013 CDH Awareness Day Proclamations and Events

View photos of April 19th events around the world!
 
 
Congenital Diaphragmatic Hernia Awareness Day


 

CDH Family Forums

Join our safe, confidential, FREE fa
mily forums and talk with over 4300 CDH families!  Now through our site or by Facebook!


Congenital Diaphragmatic Hernia Family Forums

Join the CDH Family Forums at http://www.cdhboards.org


CDH Family Support Group Facebook App


Join the CDH Family Forums via Facebook App at https://apps.facebook.com/cdhcherubs/

 
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Copyright © 2013 CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Suppot, All rights reserved.
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