CDH Awareness - Denver Parade of Cherubs on April 19, 2012

April 19th Parade of Cherubs

International Congenital Diaphragmatic Hernia Awareness Daily Celebration

Join us as we march to raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill. Everyone is welcome to participate.

 

Contact Person - Nicolle Colvin at colorado@cherubs-cdh.org

 

Facebook Event Page (more up to date details) - http://www.facebook.com/events/401343953225638/

When - Thursday, April 19, 2012.

 

3:30 – Arrive at Sand Creek Park (North side of Fitzsimons, east of Peoria Street) Aurora, Colorado
(meet, greet, and distribute balloons, cards, and wings)
4:00 – Read the proclamation from the state of Colorado
4:05 – Moment of silence to remember those CHERUBS who have grown their wings
4:10 – First phase of balloon launch for those CHERUBS lost
4:15 – Second phase of balloon launch for those CHERUBS in attendance
4:20 – Third phase of balloon launch for those CHERUBS yet to arrive
4:25 – Photographs
4:30 – End of event and good-byes

Where - a full parade route will be posted soon.

What - we will release balloons.  We ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness.

Who Can Participate - anyone who wants to raise CDH Awareness. Please register with us to participate!

What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon. All children are encouraged to wear wings. Wings stand out better on bright colored clothes. Wear comfortable walking shoes! For the White House visit on Friday, please also wear CDH Awareness Gear!

What Not to Wear - Anything trademarked or copywritten materials or phrases. No turquoise please.

Wings - you can borrow wings on April 19th if you make prior arrangements above or purchase your own wings at http://www.savethecherubs.org. Wings are also available at many party supply stores.

Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness in our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!

 

Learn more about CDH and CHERUBS at www.cdhsupport.org.

 

 

 

CDH Kids Song

I'm a real live cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
He put it all back and here's where he fixed me!

Congential Diaphragmatic Hernia Research Bill

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

Sponsor - Sen. Jefferson Sessions

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!

Change.org|Start an Online Petition »

CDH Awareness - Seattle Parade of Cherubs on April 19, 2012

April 19th Parade of Cherubs

International Congenital Diaphragmatic Hernia Awareness Daily Celebration

Register at http://seattle2012paradeofcherubs.eventbrite.com/

Join us as we march to raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill. Everyone is welcome to participate.

 

Contact Person - Christina Stembler at washington@cherubs-cdh.org

 

Facebook Event Page (more up to date details) - http://www.facebook.com/events/202451286525772/

When - Thursday, April 19, 2012.

Where - parade route below:

 

 

We will be meeting on Pier 62/63 (if standing in front of the aquarium, it is to the right) at 11-11:30 A.M.

At 11:30 A.M. we will begin walking, we will pass Seattle Aquarium and End our Parade at Waterfront Park Where we will release Balloons and say a few words about how CDH has affected each of us.

Pictures and Video will be taken and used on Public Media, Advertisement, etc. I will have Media releases on hand.

ANYONE affected by CDH in the Wa area is invited to this event. I will have Event T-Shirts for everyone to wear.

We will be Joined by The Real Charitable Housewives of Seattle. Let’s make this a GREAT event!

 

 What - we will march to raise awareness Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness.

Who Can Participate - anyone who wants to raise CDH Awareness. Please register with us to participate!

What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon. All children are encouraged to wear wings. Wings stand out better on bright colored clothes. Wear comfortable walking shoes!   If you choose to purchase the T-Shirt at the end of the event the cost is $7.50.

What Not to Wear - Anything trademarked or copywritten materials or phrases. No turquoise please.

Wings - you can borrow wings on April 19th if you make prior arrangements above or purchase your own wings at http://www.savethecherubs.org. Wings are also available at many party supply stores.

Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness in our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!

 

Learn more about CDH and CHERUBS at www.cdhsupport.org.

 

 

 

CDH Kids Song

I'm a real live cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
He put it all back and here's where he fixed me!

Congential Diaphragmatic Hernia Research Bill

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

Sponsor - Sen. Jefferson Sessions

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!

Change.org|Start an Online Petition »

Free Facebook Cover Banner:

Congenital Diaphragmatic Hernia Awareness - April 19

April 19th is approaching quickly. Need some CDH Awareness Items? 1000's of items including posters, hats, shirts, water bottles, jewelry, sweats, bags and much more in 100's of original, professional graphics and featuring the official CDH Awareness Ribbon, CHERUBS' cherub graphics and much more. All proceeds go to help the over 3800 CDH families at CHERUBS! ♥

http://www.cdhawarenessshop.org

Querubines Español - Hernia Diafragmática Congénita en el 19 de abril del 2012

http://www.facebook.com/pages/Querubines-Español-Hernia-Diafragmática-Congénita/173540536032640

El 19 de abril del 2012, miles de familias y proveedores de salud en 52 países se unirán en la celebración del Diario de la Conciencia de Hernia Congénita de Diafragma (CDH). Desfiles de querubines se llevarán a cabo en 7 ciudades de Estados Unidos, incluyendo un desfile de más de 300 personas quienes estarán marchando en Washington DC al capitolio para hablar con Congresistas sobre el proyecto de ley para investigaciones sobre CDH de $50,000,000 para salvar las vidas de estos bebés. Otras ciudades con eventos son Denver, Chicago, Seattle, Peoria, Portland, y St. Louis. Los gobernadores y alcaldes en varios estados van a proclamar el 19 de abril el día para fomentar la conciencia de CDH. En el Reino Unido, las familias estarán prendiendo velas y linternas por todo el país. También hay familias en más de 50 otros países quienes van a participar virtualmente.

CDH es un defecto congénito que ocurre en 1 de cada 2500 bebés – afectando a un bebé cada 10 minutos en el mundo. Eso ocurre cuando el diafragma no termina de formar totalmente y esto hace que los órganos del abdomen suban a la cavidad torácica y no permite el crecimiento de los pulmones. 50% de los bebés que nacen con CDH no sobreviven. El otro 50% sufren hospitalizaciones largas y recuperaciones complicadas. Se desconoce la causa.

El 1 de abril les invitamos a ayudarnos a crear conciencia de CDH uniéndose en el Desfile Virtual de Querubines en línea. Usen camisetas del evento sobre la creación de conciencia de CDH, añaden una Twibbon gratis a su perfil en Facebook o Twitter, tomen fotos o videos y pónganlos en línea o cambien su imagen de entrada de Facebook a una de las gráficas gratuitas de la conciencia de CDH que ofrecemos. ¡Mas importante que todo, escriban en sus paredes en Facebook y cuéntenles a otros sobre CDH y como les ha afectado e inviten a otros a unirse!

2012 Annual Member Census - CHERUBS Helps CDH Families in 52 Countries

click on the map to enlarge the image.


CHERUBS has been priviledged to help over 3900 families affected by Congenital Diaphragmatic Hernia since 1995.   Our membership has increased drastically in 1 year from members in 38 countries to members in 52 countries on 6 continents.  Our membership includes families and medical professionals touched by CDH.

click on the map to enlarge it.

3069 members are located in the United States.  The map above shows the membership in each state, as well as highlights those states holding parades for April 19th, the celebration of Congenital Diaphragmatic Hernia Awareness Daily. 

If you would like to talk to other families, please visit our free support forums at http://www.cdhboards.org

Also shown are those states whose governors have written proclamations for April 19th as of March 29th.   Several other states are in the process of confirming.   Thank you to all of our members who are writing their governors to help raise awareness.  We are thrilled at such a great response without promoting proclamations this year.  If you would like to get a proclamation for your state, it's as simple as going to your governor's web site and sending him / her an e-mail request for a proclamation, telling them about CDH and sharing  your story.  We ask that you please use the term "Celebration of Congenital Diaphragmatic Hernia Awareness Daily" rather than "Congenital Diaphragmatic Hernia Awareness Day" as that is trademarked by another charity.   Thank you for helping to raise awareness!!!

CHERUBS In The Boston Marathon

A HUGE thank you to Bonnie Johnson for representing CHERUBS in the 2012 Boston Marathon in memory of Brielle Santo!

Please go support her!  We would love to have a cheering section for her there in Boston!  :)


http://www.crowdrise.com/Bostoncherubs

HERE'S THE STORY:


Hi my name is Bonnie! I had recently set a goal to qualify and run in the Boston Marathon. Now that I have qualified & got in,  I have decided to run for a cause. One that is very close to my family and heart.

Let me tell you about my great niece Brielle Theresa Santo born June 9th, 2010 to Frank & Carol Santo .  She was born with Congenital Diaphragmatic Hernia.   Brielle was on this earth for 16 days and  we give  thanks to God for those 16 days with her family. She will be forever in our hearts.   Before Brielles' birth, we have never heard of this condition which has taken so many babies lives. So now I am running not only to raise awareness but to raise funds for research through The Cherubs Organization.

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. 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.

Won't you please join me? No amount is too small!

CDH Awareness - Chicago Parade of Cherubs on April 19, 2012

CDH Awareness - Chicago Parade of Cherubs Thursday, April 19, 2012 from 11:00 AM to 2:00 PM (CT) Chicago, IL

Register For The Parade at http://chicago2012paradeofcherubs.eventbrite.com/

Facebook Event Page - http://www.facebook.com/events/402344086447657/

Event Schedule:

• 11:00 a.m. – Arrive at Oz Park (Northeast end off of Lincoln Ave) – 601 W Webster Ave, Chicago, IL 60614
• 11:15 a.m. – Moment of silence to remember those CHERUBS lost
• 11:20 a.m. – Balloon launch
• 11:30 a.m. – Wrap up pictures and begin march/parade (1.2 miles)
• 12:15 p.m. – Finish march back at Oz Park
• 12:30 p.m. – Walk to Buffalo Wild Wings (about ½ mile from park) for Lunch (http://www.buffalowildwings.com/) –
• 2464 N. Lincoln Ave., Chicago
• 2:00 p.m. – Good-byes

 April 19th Parade of Cherubs

International Congenital Diaphragmatic Hernia Awareness Daily Celebration

Join us as we march to raise Congenital Diaphragmatic Hernia Awareness as well as support the CDH Research Bill. Everyone is welcome to participate.

Contact Person - Neil Rubenstein at illinois@cherubs-cdh.org

Facebook Event Page (more up to date details) - https://www.facebook.com/events/402344086447657/

When - Thursday, April 19, 2012.

Where - Oz Park (Northeast end off of Lincoln Ave) – 601 W Webster Ave, Chicago, IL 60614

What - we will march to raise awareness Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness.

Who Can Participate - anyone who wants to raise CDH Awareness.  Please register with us to participate! 

What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon.  All children are encouraged to wear wings.  Wings stand out better on bright colored clothes.  Wear comfortable walking shoes! 

What Not to Wear - Anything trademarked or copywritten materials or phrases.  No turquoise please. 

Wings - you can borrow wings on April 19th if you make prior arrangements above or purchase your own wings at http://www.savethecherubs.org.  Wings are also available at many party supply stores.

Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness in our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign!

Learn more about CDH and CHERUBS at www.cdhsupport.org.

CDH Kids Song

I'm a real live cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
He put it all back and here's where he fixed me!

Congential Diaphragmatic Hernia Research Bill

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

Sponsor - Sen. Jefferson Sessions

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!

Eli's Fun Run

Many thanks to all the wonderful people who turned out on March 17th in Wilmington, NC to run or walk in memory of Eli Willis and raise funds for CHERUBS to help other babies affected by CDH!

The State of Colorado Issues A Proclamation for CDH Awareness on April 19th

On March 15th the Governor of the state of Colorado proclaimed APRIL 19, 2012 the day of "Celebration of Congenital Diaphragmatic Hernia Awareness Daily"!!!!! WTG, CDH mom, Jennifer Rodi!!!

Virtual Parade of Cherubs on April 19th

In February, CHERUBS created the first ever virtual parade for Congenital Diaphragmatic Hernia awareness!

http://www.facebook.com/CherubsVirtualParade

On April 19th, the international day of celebration for awareness for Congenital Diaphragmatic Hernia, we invite you to join us on-line to reach millions!

How to participate in the CDH Virtual Parade:

S
tarting the morning of April 19, there are a number of ways you can "virtually" participate in the parade to help spread CDH awareness.

Facebook: Post as many pictures of your CHERUB (survivor or angel) as you want throughout the day to this page's wall. The more pictures that get posted, the more awareness this will bring to all your friends, family, etc. of how prevalent CDH really is. Type any description you want and tag CHERUBS or anybody else you want on each picture.

Twitter: Post as many pictures of your CHERUB (survivor or angel) as you want throughout the day to your profile and use HASHTAG #SavetheCHERUBS. Please :CC @CHERUBS on each picture you post too. Let's make this hashtag trend!

Google+: Post as many pictures of your CHERUB (survivor or angel) as you want throughout the day to your profile and use HASHTAG #SavetheCHERUBS. Please +CHERUBS on each picture you post too.

Pinterest: If you want to post your pictures here as well, please let me know. I will add you to the CHERUBS Virtual Parade board already created, so you can contribute.

That's it! The more participation...the more pictures....the more awareness we can bring to this not so rare, rare birth defect.