Congenital Diaphragmatic Hernia Congressional Bills

Congenital Diaphragmatic Hernia Congressional Bills

Congential Diaphragmatic Hernia Research Bill	Congenital Diaphragmatic Hernia Awareness Bill
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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.

Look Up Your Congressmen To find his / her mailing address
Download Letter to Send To Your Senator / Congressman
Include The CDH Research Bill and a photo of your cherub
Sign the CDH Research Bill petition and ask others to sign as well!

Congenital Diaphragmatic Hernia Awareness Bill
In support of preventing trademarks on any phrase that inhibits awareness of any cause.

The first and only trademark on awareness of a cause in the United States is "Congenital Diaphragmatic Hernia Awareness" and was filed in 2007 by Breath of Hope, Inc and harmed CDH patients and their families by limiting CDH awareness and in turn, hampering CDH research. This precedent setting trademark opened doors for trademarks such as "Autism Awareness", "Breast Cancer Awareness" and all causes, impeding awareness efforts and research funds that can help millions.

UPDATE: We Beat The CDH Awareness Trademark!

After 2 years, the trademark on "Congenital Diaphragmatic Hernia Awareness has been finally been removed! Our sincerest appreciation to our pro bono legal team at Parker Poe Adams & Bernstein, LLP!

April 19th Parade of Cherubs in Washington DC
International Congenital Diaphragmatic Hernia Awareness Daily Celebration

Join us as we march in the Parade of Cherubs from the Lincoln Memorial to the Washington Monument to Capitol Hill where we will meet with Congress and raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill. Everyone is welcome to participate.

When - Parade starts at 10:00 am at the Lincoln Memorial in Washington, DC on Thursday, April 19, 2012. On Friday, April 20th we will visit the White House.

Where - a full parade route will be posted soon, as well as information on stops on the DC Metro so you can park and ride into DC.

What - we will march 2.7 miles from the Lincoln Memorial to the Washington Monument, past the White House to Capitol Hill. At Capitol Hill, we will tour and meet with Senator Jefferson Sessions, sponsor of our CDH Research Bill. 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. You MUST register with us to participate! You MUST fill out a form (to be posted soon) before February 29th for us if you wish to tour the Capitol and White House with us.

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 at breakfast at the hotel at 8:00 on April 19th or purchase your own wings at http://www.savethecherubs.org

Special thanks to Mandy Sroka Photography for being our official photographer for the even, Chic Events Productions for all their planning help and Alarm Security for sponsoring the wings!

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!

Accomodations - we have selected two hotels for our event in April:

<>Hampton Inn & Suites Alexandria Old Town Area South
5821 Richmond Way

Alexandria, VA 22303

Map

The primary hotel for the CHERUBS event will be the Hampton Inn and Suites. The Hampton has offered our group an average rate of $149/night. The rate will be charged at $189/night for Wednesday and Thursday stays and $109/night on Friday and Saturday stays. The rate is available from April 18^th – 22^nd, 2012

To book a room call the hotel directly at 703-329-1400 and ask for the “CHERUBS” group rate on or before the group cut-off date of 3/19/2012.

Reservations can also be made by calling Hampton Inn/Hilton’s central reservation line. To book, call 1-800-426-7866 and request the “Hampton Inn & Suites Alexandria Old Town Area South” then request the Established Group Name of “CHERUBS” on or before the group cut-off date of 3/19/2012.

Individuals may cancel without penalty anytime up to 4:00 p.m. the day of arrival. Cancelations made after 4:00 p.m will be charged a cancelation fee of one night.

The Hampton is located less than 1 mile from the Historic sections of Old Town Alexandria offers the following amenities:

·         Free hot breakfast bar

·         Free parking

·         Free internet

·         Free 24 hour shuttle service* to the Huntington Metro Station, Historic Old Town Alexandria and Reagan National Airport

*The shuttle is a 10 passenger van available for all hotel guests on a first come first serve basis. Call the hotel directly for airport pickup.

Comfort Inn at the Pentagon

2480 South Glebe Road

Alexandria, VA 22206

Map

The overflow hotel for the CHERUBS event will be the Comfort Inn. The Comfort has offered our group a rate of $139/night. The Comfort is not very close to local restaurants. The rate is available from April 18^th – 22^nd, 2012

To book a room call the hotel directly at 703-682-5500 and ask for the “CHERUBS” group rate on or before the group cut-off date of 3/19/2012.

Individuals may cancel without penalty anytime up to 24 hours prior to the day of arrival. Cancelations made after less than 24 hours prior to arrival will be charged a cancelation fee of one night.

The Comfort is located in Alexandria and offers the following amenities:

·         Free hot breakfast bar

·         Free parking

·         Free wireless internet

·         Free shuttle service 6 a.m. until 10 p.m.* to the Pentagon City Metro Station and Reagan National Airport

*The shuttle is a 10 passenger van available for all hotel guests on a first come first serve basis. Call the hotel directly for airport pickup.

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!

Order commemorative CDH Awareness Gear

Free Facebook Cover Banner:

Event registration for 2012 Parade of Cherubs in Washington DC

Feel free to download this shirt graphic to raise CDH Awareness:

Congenital Diaphragmatic Hernia Awareness

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Be a part of history and help babies affected by Congenital Diaphragmatic Hernia by supporting both of these bills. Click on the links below to learn what easy things you can do to help.

Congential Diaphragmatic Hernia Research Bill	Congenital Diaphragmatic Hernia Awareness Bill
The Bill \| CDH \| News \| Sponsors \| Contact Your Congressmen	We Beat The CDH Awareness Trademark! \| Sign Petitions

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