Wednesday, January 28, 2015

Pittsburgh, Pennsylvania Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!

 
 

This proclamation was requested on behalf of the Cummings family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter.

Tuesday, January 27, 2015

Tennessee Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Lambert family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter.

Monday, January 26, 2015

Iowa Proclaims April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day!


This proclamation was requested on behalf of the Schuller family!

Want to take action too? Send a proclamation request to your governor and mayor to proclaim April 19th, 2015 as Congenital Diaphragmatic Hernia Action Day! Click here to download a blank letter.


Sunday, January 18, 2015

90 Days until Congenital Diaphragmatic Hernia Action Day!

How are you going to take action against CDH?

April 19th is Congenital Diaphragmatic Hernia Action Day! Congenital Diaphragmatic Hernia Awareness is key factor in helping with more funding for research.

Here are just some ways you can help raise CDH Awareness:

  • Write your governor and mayor to proclaim April 19th Congenital Diaphragmatic Hernia Action Day. Click here for a sample letter. 
  • Wear CDH awareness apparel and merchandise. Click here to shop now. 
  • Hold an event. Click here for more details. 
  • Participate in the "Save The Cherubs Campaign". 
  • Join us on Capitol Hill on March 30rd-April 1st. Click here for more details. 
  • Request buildings, bridges, and landmarks to light it up blue, pink, and yellow on April 19th.
  • Donate a tweet a day at www.justcoz.org/cherubs
  • Share posts, graphics, and updates from our social media pages. 
  • Contact the media! Go to your local news, radio, paper, etc. and ask them to do a story on CDH.
  • Ask local billboard company if they will donate a CDH awareness billboard. Some companies will donate digital billboards when available. 
  • Be a guest blogger on our Nicolas Sparks blog. Email your entry to awareness@cherubs-cdh.org
  • Join our Awareness Committee. The more people we have working together the more we can accomplish. Click here to join!


Saturday, January 3, 2015

CDH Action Day 2015

We are very excited about all the incredible events and accomplishments that we are working on for April 19th, Congenital Diaphragmatic Hernia Action Day and for the month of April, Congenital Diaphragmatic Hernia Awareness Month!

If you would like to participate by holding an event, joining in a parade, asking for a proclamation, lobbying on Capitol Hill or helping to light up a building, please contact our CDH Awareness Leader, Felecia Woodruff at awareness@cdhsupport.org

Join us and 1000's of CDH families around the world to bring awareness and real help to this little known, but not rare, birth defect that strikes a baby every 10 minutes.  

Because awareness is not enough and action speaks louder than words!

Wednesday, December 3, 2014

Thursday, November 13, 2014

CHERUBS Awarded the Point of Light Presidential Award

BREAKING NEWS:

CHERUBS is very, very proud to announce that we are 2014 Points of Light Presidential Award Winner!




Started by President George H.W. Bush, the Points of Light Program recognizes Americans who work hard to change the world and make a difference in the lives of others. Signed by President Bush himself, this award is given to ALL of our many incredible volunteers at CHERUBS!

Of course we always knew how amazing they all were, but it's phenomenal that the whole country recognizes them as well!

THANK YOU to Tracy Meats and Josh Hensley for being our Volunteer Coordinators and Ashley Barry, our VP, for leading such a wonderful, dedicated group of selfless people who work so hard to help CDH families! We are VERY proud of each and every one of you!!!

http://www.pointsoflight.org/programs/recognition/dpol/awards/5283

Learn more about CDH and how you can support CHERUBS at http://www.SaveTheCherubs.org/

Friday, October 24, 2014

Birth Defect Awareness Killed by Sensational Media by J. C. Kuehn Miller

Guest Blogger - J. C. Kuehn Miller

Originally posted at http://jckuehnmiller.wordpress.com/2014/10/24/birth-defect-awareness-killed-by-sensational-media/

Birth Defect Awareness Killed by Sensational Media

Sensational reporting is the death of certainty and social awareness. The reporters seek to please their editors. The editors wish to please the paper’s owners. The owners want to make money. The public needs to be amused. Amusement is the undoing of truth.

enhanced-24058-1413910781-22On October 17th, 2014, Christian Faith Benge collapsed and died in an Ohio haunted house attraction. The mainstream media picked up the story several days later. The problem? They completely ignored the actual cause of her collapse. Christian was born with Congenital Diaphragmatic Hernia (CDH) along with other birth defects. These complications ultimately led to her enlarged heart stopping in the middle of the Halloween attraction.

 

 

 

CDH AWARENESS

CDH is a birth defect found in 1 out of every 2500 babies. It has a 50% mortality rate. The cause is not known.
Non-profit organization, CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support, is headquartered in Wake Forest, NC. For 19 years now, CHERUBS has advocated for and aided families with CDH babies. By completely ignoring the root cause of Christian’s death, the media struck a punishing blow to organizations like CHERUBS.
Instead of informing the public about this deadly defect, news sources spun the story to advertise Halloween activities. Instead of reporting the facts, papers opted for click-bait styled headlines. Instead of giving potential donors information, journalists capitalized on the real emotion felt by everyone hurt by this event.
Sensational headlines like the following did nothing but stir up strife for Christian’s family and friends.
  • “Scared to Death? Teen Has Fatal Heart Attack at Ohio Haunted House” by Hasani Gittens (NBC News)
  • “Did a Haunted House Scare This Teen to Death?” by Leah Rocketto (PopSugar)
  • “Ohio Teen With ‘Time Bomb’ Heart Condition Fatally Collapses While Walking Through Haunted House” by Rida Ahmed (HNGN)
  • “Family Denies Teen Was ‘Scared to Death’ at Haunted House” by Gillian Mohney (ABC News via Good Morning America)
  • “Christian Faith Benge Dies After Heart Stops In Haunted House” by Andres Jauregui (Huffington Post)
  • “Can You Be Scared to Death at a Halloween Haunted House?” by INSIDE EDITION
In that last article by INSIDE EDITION, the mother, Jean Benge, is quoted saying, “It’s not fair to us and the family to read the awful articles that she was scared to death,” yet they still chose to publish the article with that same incendiary phrase.

The blame does not solely rest on the media. They have money to make. The public starves for entertainment. They seek distractions from the reality of everyday life. Caught up in sensational phenomena like we saw with the ALS Ice Bucket Challenge, the public makes Idiocracy reminiscent videos rather than educating themselves about the actual disease.

TAKING BACK THE MEDIA

To regain ethical journalism, we must understand the symbiotic relationship between the media and the public. We, as a reading community, need to hold news outlets accountable for the quality of facts-based reporting. Likewise, the media needs to encourage our society to look at the facts, to think critically, and to embrace an awareness of their neighbors. If we can agree to fulfill this idea of accountability, then our social consciousness will be more in harmony than any other time in recent history.

In order to understand the weight of how detrimental fear-mongering and click-driven journalism really is, we must first look outward and then inward. Look outward to Christian Benge. Look at her life. Look at how hard she fought for 16 years. Imagine her mother, Jean Benge. For 16 years, she watched her beautiful daughter grow up- against all odds. Be empathetic to their suffering.
Now, look at the headlines. Look at how the news sources dealt so heartlessly with her story. How they turned a blind eye toward the cause of Christian’s death. How they could have brought CDH to the public eye. How would you like to be remembered as the girl who was “scared to death?” No, let us remember Christian Benge how we would want to be remembered: as an individual who succumbed to a lifelong struggle with a vastly unknown birth defect.

SAVE THE CHERUBS

Keep your thoughts and prayers with the Benge family. Keep your thoughts and prayers with all the CDH families across the globe.

If you want more information or want to donate toward CDH Awareness, Support, and Research, visit the CHERUBS website.

Tuesday, October 21, 2014

Congenital Diaphragmatic Hernia Action Day

April is Congenital Diaphragmatic Hernia Awareness Month as recognized by Capitol Hill and many governors and mayors.   April 19th has been known as the "International Day of Congenital Diaphragmatic Hernia Awareness".  Until now.

After several years of dedicating one day to CDH Awareness, we have come to the conclusion that it's not enough to just raise awareness.  We need to take action!   Please join us in participating in the very first annual World Congenital Diaphragmatic Hernia Action Day on April 19th.
  • Donate
  • Volunteer
  • Hold a Fundraiser
  • March in a Parade
  • Raise Awareness
  • Share your Story
  • TAKE ACTION!
Together, we can save lives of babies born with Congenital Diaphragmatic Hernia.

http://www.SavetheCherubs.org