CHERUBS and CDH on TV

A few weeks ago, CHERUBS was on television to talk about CDH and the Masquerading Angels Ball.  So much has been going that we forgot to post it on our blog, so here it is! 

http://triangle.news14.com/content/in_depth/631902/in-depth--dawn-williamson--cherubs

Soap star Patsy Pease from Days Of Our Lives helping local charity in national contest to win $100,000 for critically ill babies

From MyNC.com - http://wake.mync.com/site/wake/Community/story/54414

Patsy Pease and her son, Russell, a CDH survivor

Updated: Aug. 16 4:24 pm

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WAKE COUNTY, N.C.

CHERUBS is a local charity, based in Wake Forest. We are currently battling between 1st and 2nd place in a national contest on Facebook for $100,000.

Patsy Pease is the celebrity spokesperson for CHERUBS, having a son who survived CDH.Patsy has been helping us through Facebook to get votes.

The Raleigh News & Observer did a piece on us in Sunday's paper.

The APX contest ends THIS week. We need all the local support and help that we can get. $100,000 would more than triple our charity's small annual budget—we help families in 38 countries so we need funds desperately for research and family support. CHERUBS also has 2 projects in the Pepsi Refresh contest

Congenital Diaphragmatic Hernia is a birth defect that occurs in 1 in 2500 babies; as common as Cystic Fibrosis and Spina Bifida. Over 600,000 babies have been born with CDH since 2000—it has taken the lives of over a quarter million of these children. It occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of these babies do not survive. The cause is not known. CHERUBS is the world's first and largest CDH charity and was founded right here in the Triangle in 1995 after my own son spent his first 10 months in the intesive care unit at Duke and then many subsequent hospitalizations at both Duke and UNC until he passed away at age 6. Please consider doing a piece on this story—we so need the votes and awareness for CDH. Thank you so much for your time and assistance

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!!!!!!!! :)

Let's get Dr Oz to do a CDH show

Ok CDH families, let's get Dr Oz to do a CDH show!

Share your story or copy and paste CDH info (you can use any of ours posted here or on our blog, site, etc)

http://www.doctoroz.com/plugger?tid=21

Below is Dawn's letter - feel free to grab any statistics!


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Dear Doctor Oz,

Please consider doing a show on Congenital Diaphragmatic Hernia.

CDH is a devastating birth defect that affects 1 in every 2500 babies. A baby is born with CDH every 10 minutes - this adds up to half a million babies since 2000. This is as common as Cystic Fibrosis and Spina Bifida but yet most of the public has never heard of it. CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to move into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive. The cause is not known.

I run an international grassroots charity here in the NC called CHERUBS. We help families of babies born with Congenital Diaphragmatic (CDH). CHERUBS was founded in 1995 after my son was born with CDH and transferred to Duke. I was 19 years old, there was no internet, no support group and no information. Thus, CHERUBS was started and now we help 1000's of families, on a shoe-strung budget with no paid employees, and we run the largest long-term CDH research database in history. We are the world's oldest and largest CDH organization and work with families and doctors in 38 countries. Yet, we are struggling to raise CDH Awareness.

We have dozens of members who would love to be on your show and talk about their children. You could talk about CDH repair, in utero procedures such as fetal tracheal occlusion, ECMO, long-term issues, etc.

CDH is as common as Spina Bifida and Cystic Fibrosis, yet we have so little awareness and virtually no research. Your show could do so much for our cause by bringing CDH Awareness to millions. And I know it can help so many CDH families to less alone.

We would be so appreciative if you would consider doing a story on CDH.

Thank you so much.

Dawn Williamson
CHERUBS President & Founder
919-610-0129
http://www.cdhsupport.org
http://www.cdhresearch.org
http://cdhsupport.blogspot.org
http://www.shane-torrence.org (my son's story)

CDH & Cherubs in the Media!

LOTS of CDH Awareness going on this summer!

Oklahoma City, OK newspaper "The Oklahoman" with Dawn, LaneyKate Daniels & family and the CDH Study Group (September, 2008) - http://newsok.com/parents-of-children-with-congenital-diaphragmatic-hernia-cdh-warn-world/article/3290587

Raleigh / Durham / Chapel Hill, NC News 14 television interview with Dawn (July, 2008)- http://news14.com/content/local_news/triangle/597536/group-brings-attention-to-disease/Default.aspx

Children's Hospital, Alabama with Caden Parker (July, 2008) - Radio Telephone for Children's Hospital

Durham, NC "Herald-Sun" newspaper article on CHERUBS Angel Ball (July, 2008) - http://heraldsun.southernheadlines.com/features/columns/ray/104-976419.cfm

Middleton, OH "Middleton Journal" newspaper articles on Henry English (June, 2008) - http://www.middletownjournal.com/news/content/oh/story/news/local/2008/06/01/mj060108mccrabbhenry_a1.html
and http://www.middletownjournal.com/n/content/oh/story/news/local/2008/06/01/mj060108mccrabbhenry_inside.html

Arkansas, Jack Ryan Gillham Foundation in the local paper and TV (July, 2008) - http://www.4029tv.com/video/16851917/index.html and http://www.nwarktimes.com/adg/News/230536/

Carolina News Wire press release (July, 2008) - http://carolinanewswire.com/news/News.cgi?database=001news.db&command=viewone&id=262&op=t

Plus several more articles and interviews that will be out soon!

CDH on YouTube... chosen charity raising lots of awareness!

I have some really great news for us CDH families! YouTube has chosen CHERUBS as one of their chosen charities and they even sent us a brand new Flip video camera to help bring more CDH Awareness to their site! We will be using it at conferences and events and to interview CDH families. We are really excited about this because YouTube is a huge site and this will bring a lot of awareness to a lot of people! :)

Also, we are putting together several videos - including one for parents of newly diagnosed CDH babies that the doctors will be using. We are really excited to be working with the medical community to help expectant parents and to do this job right, we need your help! Please submit any videos that you want included to our YouTube site and our great video volunteers will be using those videos for the CDH Informational Video. The more CDH families that participate, the better, because all of our stories are so different. By the way, these videos will also be going to television stations as well! :)

http://www.youtube.com/user/cdhsupport

Grey's Anatomy and Diaphragmatic Hernia Awareness

Last night's episode of Gray's Anatomy featured a child with DH. You can view it on ABC's web site.

We're asking all CDH parents, family and friends to please post to Gray's Anatomy's message board to try to bring more awareness to CDH:

http://abc.go.com/primetime/greysanatomy/index?pn=mb&tsn=-1&cat=30931&tid=181433

Please, go, post your story, post the link to CHERUBS (http://www.cdhsupport.org) so other parents can find support too and please, most importantly, help us to raise awareness!

Please forward this all your MySpace Friends!

Thank you all!

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

http://www.cdhsupport.org