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











Tuesday, October 14, 2014

CHERUBS 20th Anniversary Reunion Cruise & CDH Conference

Join us as we celebrate our charity's 20th year by sailing the seas!  


CHERUBS 20th Anniversary Reunion Cruise & CDH Conference
August 23 - 29, 2015
Sailing from Miami to Cozumel, Jamaica and Grand Cayman

Our charity is celebrating 20 years of serving the CDH Community by traveling the Caribbean and combining our annual CDH conference and luxury family vacation opportunities into an affordable, informative, supportive and FUN 20th Anniversary Reunion!

8/23/15 sailing of the brand new Carnival Breeze!- 6 night sailing arrives back on 8/29/15. Leaves from the port of Miami and visits, Jamaica, Grand Cayman and Cozumel with 3 days at sea.

Register here! 


Make a splash with Carnival cruises to Cozumel, a Caribbean island perched atop a coral reef. Cruises to Cozumel, Mexico, dock at the island’s heart—just minutes from San Miguel’s seafront shops and the white sand beach at Chankanaab National Park. Drift among star corals and sea fans on a Cozumel diving excursion or simply kick back on the beach beneath your own palm palapa as the turquoise waves roll in. Cruise to Cozumel for a scuba diving adventure along the Great Mesoamerican Reef. Enjoy a leisurely day of snorkeling with iridescent fish at Chankanaab National Park. Swim with dolphins at Dolphinaris.
Cruise to Jamaica to discover the historic charms of this former sugar boomtown. The plantation days of Falmouth, Jamaica, are gone, but what remains is the largest collection of intact colonial Georgian architecture in the Caribbean, set on sand-dusted streets and a wind-swept harbor. On Carnival cruises to Falmouth, Jamaica you can kick back on a crescent of white-sand beach and explore the great houses of old sugar plantations. Visit Falmouth’s quaint 18th-century waterfront village. Feel the rush of flowing water in Dunn’s River Falls. Kick back at the ultimate beach bar, Time ‘n’ Place. Swim in the turquoise seas at Jacob Taylor Beach when you cruise to Falmouth. Explore Jamaica’s sugar plantation past at Good Hope Plantation House.

Enjoy laidback British civility in a sun-splashed tropical locale on your Carnival® Grand Cayman cruise. Don’t let the island’s scrubland terrain fool you—a spectacular marine paradise lies just offshore of Grand Cayman, Cayman Islands, where a living undersea wall drops dramatically into the ocean deep. Cruises to Grand Cayman bring you directly to the best scuba diving and snorkeling in the kaleidoscopic Caribbean Sea. Stretch out on the glimmering white sands at Seven Mile Beach. Stroll the shops, cafes, and museums in George Town, Grand Cayman. Swim with gentle stingrays in Stingray City on your Grand Cayman cruise. Dive in the wondrous undersea world along the Cayman Wall. Spot native parrots and lizards in the Queen Elizabeth II Botanic Park.

Pricing:

For 2 people in a cabin; Inside- $1273.06, Balcony- $1773.06
For 3 people in a cabin; Inside- $1619.59, Balcony- $2119.59
For 4 people in a cabin; Inside- $1906.12, Balcony- $2526.12

Pricing includes conference and cruise, all taxes and port charges.  Pricing does not include optional excursions and add-ons.  Insurance is not included and may be purchased at $79.00 per adult and $49 per child. Tips are extra and may be paid on the ship or prepaid if you prefer. Recommended tip is $11.50 per person per day (which is $69 per person for the trip). If you need air, a hotel the night before/after that is additional and I can help you with that. 

There is an initial deposit of $35 per person due to hold each person's berth in the cabin. That is due immediately upon registration to hold the cabin.

Full (non-refundable) deposit of $250 per person is due on 3/27/15 or before. The remaining balance is due on 6/09/2015.   This will go through our event planner, Susie.  Please contact her with any questions about the ship.

Register here!

To make the deposit call Susie Kay, ACC at Piece of Cake Travel at 919-696-3007. I can also be reached at pieceofcaketravel@gmail.com for any additional questions you may have.

Carnival Breeze

Carnival Breeze — Miami’s hottest destination — sails toward islandy hotspots across the Caribbean. Fun-fan favorites like SportSquare and mouth-watering dining spots like Cucina del Capitano are just the beginning of how Carnival Breeze keeps the fun blazing.

Enjoy the island atmosphere of RedFrog Rum Bar, or south-of-the-border taco goodness at BlueIguana Cantina. There’s family fun (and games) at Hasbro, The Game Show and ha-ha hilarity at the Punchliner Comedy Club Presented by George Lopez. Let’s not forget Guy's Burger Joint, which features signature, hot-off-the-grill burgers designed by celebrity chef Guy Fieri! There are many fish in the sea, and you'll find a nice selection of them at Bonsai Sushi.

http://secure.carnival.com/cruise-food/?shipCode=BR

Carnival Breeze has the whole family covered — with water, that is — with a 320-foot-long Twister Waterslide at Carnival WaterWorks. Just for the kids there’s supervised youth programs like Camp Carnival and Club O2. And for the bigger people, there’s just-me-time to be had relaxing at Serenity Adult Only Retreat… after you pamper yourself at Cloud 9 Spa, of course. Then for fun after the sun’s done, have a truly moving experience at the multi-dimensional Thrill Theater, dance in your seat at Playlist Productions… or if you prefer to do your dancing on a dance floor, check out Liquid Nightclub.


http://secure.carnival.com/onboard/view-all-onboard-activities/?shipCode=BR

http://secure.carnival.com/onboard/view-all-onboard-activities/?shipCode=BR

http://secure.carnival.com/onboard/view-all-onboard-activities/?shipCode=BR

If you notice a bit of the outdoors inside, don’t adjust your view. Carnival Breeze’s staterooms — and many of the public spaces around the ship — feature a scintillating tropical d├ęcor and contemporary furnishings that’ll transport you straight to warm Caribbean bliss.

http://secure.carnival.com/cruise-ships/carnival-breeze.aspx#


http://secure.carnival.com/cruise-ships/carnival-breeze.aspx

Register here!

Tuesday, July 1, 2014

Capitol Hill

At the 2014 CDH Conference, we not only learned about new CDH research, made friends with other CDH families but were able to thank Sen. Jeff Sessions for his good work with Senate Resolution 414 for "Congenital Diaphragmatic Hernia Awareness Month" and meet with Representatives to discuss a Resolution for CDH in the House.  

The 2014 DC Conference accomplished a ton thanks to so many amazing people;

Senator Jeff Sessions and his incredible staff, Patsy Pease, David Kays, Lori and Ashley from CHOP, Julia from DHREAMS, Jessica from Mass General, Joy Perkins, Josh Hensley, Ciarra Joyner for being "Hope", Dakota Jones and Jaden Jones for helping with the kids room, Pat Jones for helping move items and all the many, many others who work so hard to make our events successful even when they can't attend and for those who help up during the event unofficially. Not to mention ALL the amazing people who help plan like Mary Blanche and other aides on Capitol Hill and the wonderful people who help gather permits for us. 

We are truly, truly thankful for everyone who works so hard with us to help CDH babies. Thank you!!!!

Now, let's do it all again in Dublin!