Showing posts with label CDH Research. Show all posts
Showing posts with label CDH Research. Show all posts

Tuesday, February 3, 2015

How to help receive Government Funding for CDH Research

Visit Your Member of Congress

Meeting on Capitol Hill

Join us in Washington DC on March 30 - April 1, 2015 to speak directly to Senators and Congressmen about Congenital Diaphragmatic Hernia.

We set up the meetings for you and train you on what to say.  It's very easy and by participating, you get to be a part of history.

Click here to register.

 

A Step by Step Guide to Meeting Locally

Meeting with your legislator in his or her office lets you convey your message about Congenital Diaphragmatic Hernia face to face. Follow these steps to schedule an appointment and make the most of your meeting.

Step 1: Schedule an Appointment

Tips to schedule an appointment:
  • Call well in advance
  • Be prepared to be flexible
  • Be patient but persistent
  • Follow up
  • Say thank you
  • Plan to call the Member of Congress’ office well in advance of when you intend to meet with him/her.
Find your member of Congress. After you’ve looked up your member, click on their name to go to their website. Scroll to the bottom of their homepage and find the phone number for the office where you’d like to have your meeting.

Call your Member of Congress' office and ask to speak with the scheduler. To increase your chances of getting a meeting with your representative, try one of these lines:

“I’m a constituent, and I would really like to meet with the representative/senator to discuss how Congenital Diaphragmatic Hernia has affected my life. Is there a date that he/she is available for this meeting?”

“I would really like to meet with the representative/senator while he/she is back from Washington to talk about Congenital Diaphragmatic Hernia. What date would work best for his/her schedule when he/she is back home?”

Follow up! Clarify the best way for the office to contact you about your meeting request. Call the office again to check the status of your meeting request. Keep contacting the office once a week until you are offered a firm meeting time.

Some offices may require that you put your request in writing in order to schedule a meeting. Use this sample meeting request letter if you are asked to provide a written request.

Step 2: Contact Us

Tell us when you schedule your meeting!

We’ll provide you with all the tools, training, and resources you’ll need to make your meeting a success.

Click here to email the CHERUBS Awareness Committee.

Step 3: Print Your Materials

Click here to find and print all of the handouts you’ll need for your meeting.

Step 4: Attend the Meeting 

When you meet with your Member of Congress, your job is simple — to inspire. Tell your Congenital Diaphragmatic Hernia story — and remember, you’re the expert. Here are some tips to help you make the most of your meeting:

What to Share: 
How to Say It:
  • Be prepared — plan what you want to say
  • Keep it brief
  • Show up early and prepare to be flexible
  • Dress professionally
  • Leave handouts
Better to Leave Out:
  • Acronyms (like “CDH”, instead use “Congenital Diaphragmatic Hernia”)
  • A mention of who you voted for

And don’t forget to let us know how it went!

Click here to email the CHERUBS Awareness Committee.

Step 5: Send a Thank You Letter

If your Member of Congress has taken the time to support Congenital Diaphragmatic Hernia, by meeting with you or sponsoring legislation which is VERY important, it is vital to say thank you.

Here’s a sample thank you letter.

Sunday, December 1, 2013

$10,000 CDH Research Grant Contest



VOTING HAS BEGUN! Vote once a day, every day until December 30th for your favorite CDH organization to win $10,000!

https://www.facebook.com/cdhsupport/app_303561899745219


23 CDH Research Centers from around the world in the running to win a $10,000 Research Grant to the center with the most votes on December 30th.   


Who are you voting for?

  • Baylor College of Medicine CDH Genetic Lab (genetic research)
  • Boston Children's Hospital CDH Clinic (repair material research)
  • Cincinnati Children's Hospital and Medical Center (surgical repair)
  • DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab (genetic research)
  • Mass General CDH Genetic Research Study (genetic research)
  • OSF St. Francis Medical Center (CDH Clinic)
  • Shands at the University of Florida CDH Clinic (gentle ventilation research)
  • St. Louis Fetal Care Institute (fetal research)
  • Texas Children's Hospital (fetal research)
  • The Center for Fetal Diagnosis and Treatment at CHOP (fetal research)
  • UCSF Fetal Treatment Center (fetal research)
  • International CDH Study Group (long term CDH care)
  • Sydney Children’s Hospital (Australia)
  • Universitätsklinikum Mannheim gGmbH (Germany)
  • Université Paris Descartes (France)
  • Ospedali Pediatrico Bambino Gesu (Italy)
  • University Hospital Gasthuisberg (Belgium)
  • The Hospital for Sick Children (Canada)
  • National Center of Child Health and Development (Japan)
  • Sophia Children’s Hospital (Netherlands)
  • Liverpool University (United Kingdom)
  • University of Oxford (United Kingdom)
  • Scottish Congenital Diaphragmatic Hernia Clinical Network (Scotland)

Tuesday, May 21, 2013

2013 so far for CHERUBS








2013 so far for CHERUBS:

* Senate Resolution for April 2013 as National CDH Awareness Month passed UNANIMOUSLY
* House of Resolution for April 2013 as National CDH Awareness Month currently in committee with new Co-Sponsors
* Capitol Hill visit for CDH Research Fund with plans underway!
* April 19th Marches and Events in Washington DC, Chicago, NYC, Seattle, Portland, Peoria, St Louis, Gainesville, Philadelphia, Denver, Phoenix, Las Vegas, the UK, Brazil
* Over $20,000 raised for CDH Research
* Over 12,000 Facebook Fans
* Over 4400 members
* Represented the CDH Community at the 2013 American Pediatric Surgical Association conference
* Represented CDH families at the 2013 DHREAMS meeting
* New FB app for our CDH Family Forums
* New members to our Medical Advisory Board
* MANY local events and fundraisers
* New weekly e-newsletter
* Dozens of TV and newspaper interviews
* 6 new videos
* New CDH Fundraising Kit
* Over 150 totebags sent out to new and expectant CDH families
* Nominated for a Health Advocacy Award and won several awards for being an outstanding non-profit organization
* We have visited many cherubs and families in the hospital and unfortunately gone to funerals as well. We are not just an "on-line support group", we are working hard to make a REAL difference not just in funding research and raising awareness but by being there for the families that need us.

Upcoming still for 2013:

* First ever joint International Medical & Family Conference this July in Boston with attendees from 5 countries so far
* Speaking at the CDH Community at the 2013 International CDH Study Group Conference in Holland in June
* 2 Scholarships for High School Seniors (Cherubs or siblings)
* MANY local get-togethers, picnics and fundraisers
* 2013 Stories of Cherubs Book featuring over 500 cherubs
* 2013 CDH Magazine
* New web site
* On-line CDH RESEARCH DATABASE!
* 2013 Masquerading Angels Ball in Raleigh in October
* 2013 CDH Research Raffle
* 2013 CDH Research Grant Facebook Contest
* UK CDH Ball
* UK Member Get-Together

And wait until you see what we're doing in 2014!!!

What is Congenital Diaphragmatic Hernia?

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. 1600 babies are born with CDH every year in the United States. Globally, a baby is born with CDH every 10 minutes.

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.

Like what we do? Please share this status!

Please donate to help us fund all of this and so much more! Donate via the tab on our FB page or at http://www.cdhdonations.org/

Contact Tracy about volunteering at volunteer@cherubs-cdh.org

Contact Melissa about holding a fundraiser at mlarrison@cherubs-cdh.org

Learn more about CHERUBS at http://www.savethcherubs.org/




Wednesday, May 8, 2013

2013 CDH Conference in Boston, CALL TO ACTION on Congressional Resolutions, New CDH Forums Facebook



Join us to raise CDH Awareness on April 19th!

 

2013 Congenital Diaphragmatic Hernia Conference


Joint Medical and Family CDH Conference Co-Sponsored by CHERUBS, MassGeneral CDH Genetic Study Lab and Boston Children's Hospital

July 9-13, 2013 in Boston, MA
 


Join us in Boston, Massachusetts for the first ever joint Medical and Family conference for CDH!

The Inn at Longwood Medical
342 Longwood Avenue
Boston, MA 02115

 
  • Families already registered from 3 continents. 
  • Doctors submitting research abstracts for presentation. 
  • The first ever joint CDH Medical and Family Conference
  • The first ever CDH Medical Professional Panel assembled to answer family questions.  
  • Participate in CDH Research
  • Walk in the Parade of Cherubs
  • Half-day meetings so you can enjoy the local attractions
  • Meet other families and participate in round-table discussions
  • ALL CDH families and medical professionals are welcome
  • The largest CDH Conference in history!

Click here to learn more and to register for this amazing event!  http://www.cdhconference.org

Download the Prospectus - http://www.cherubs-cdh.org/conference/2013CDHConference.pdf
 
 
CDH Boston Genetic LabCHERUBSBoston Children's Hospital


CALL TO ACTION

Votes need for H Res 114 for Congenital Diaphragmatic Hernia Awareness Month in the United States House of Representatives

On March 20, 2013 the United States Senate unanimously passed S. Res. 85 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH.

Senator Jeff Sessions speaks on S Res 85 and H Res 144 for Congenital Diaphragmatic Hernia Awareness
(Click to watch the video)

Senator Jefferson Sessions (R-AL) formally introduced the Resolution, co-sponsored by Senator Benjamin Cardin (D-MD).

On April 9, 2013 Rep. Martha Roby (R-AL) andRep. George Holding (R-NC) introduced H. Res. 114 to make April 2013 NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH


Please ask your Congressmen to support the companion Resolution H Res 114 in the United States House of Representatives.

Go here to track the progress of the House Resolution -
http://www.govtrack.us/congress/bills/113/hres144#

Download H Res 114 -
http://www.govtrack.us/congress/bills/113/hres144/text

Senate Res. 85 - http://www.govtrack.us/congress/bills/113/sres85

Look Up Your Congressmen to find his / her mailing address - http://www.house.gov/writerep/

Call and ask to meet with your Congressman or their health aide in Washington DC or your state.

Write a letter or e-mail and tell them your story and ask them to vote for H. Res. 114

April 19, 2013 CDH Awareness Day Proclamations and Events

View photos of April 19th events around the world!
 
 
Congenital Diaphragmatic Hernia Awareness Day


 

CDH Family Forums

Join our safe, confidential, FREE fa
mily forums and talk with over 4300 CDH families!  Now through our site or by Facebook!


Congenital Diaphragmatic Hernia Family Forums

Join the CDH Family Forums at http://www.cdhboards.org


CDH Family Support Group Facebook App


Join the CDH Family Forums via Facebook App at https://apps.facebook.com/cdhcherubs/

 
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Copyright © 2013 CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Suppot, All rights reserved.
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Tuesday, December 4, 2012

CHERUBS sponsors $10,000 Facebook Contest to Benefit CDH Research




Something very exciting is going on at CHERUBS and we want YOU to be a part of it! Thanks to all of you wonderful members and fans for buying and selling raffle tickets we are ready to award a $10,000 CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH GRANT!!!! 

We could choose a hospital ourselves but we thought it would be more fun, and raise more awareness, to get your help! So the hospital with the most votes by December 30th will win $10,000 for CDH Research!!!!!!!!!!!!

Vote at https://www.facebook.com/questions/10151158907097006

In the running are the following CDH labs and clinics:


  • Congenital Diaphragmatic Hernia (CDH) Genetic Research Study
  • DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab 
  • St. Louis Fetal Care Institute 
  • Baylor College of Medicine CDH Genetic Lab 
  • The Center for Fetal Diagnosis and Treatment at CHOP 
  • UCSF Fetal Treatment Center 
  • Shands at the University of Florida CDH Clinic 
  • Boston Children's Hospital CDH Clinic 

 These facilities were chosen based on research history and long-term research so that the most families can be helped.

The prize money was raised by members and friends of CHERUBS through a 50/50 raffle fundraiser over the summer and early fall.   9003 tickets were told to raise $9003.00.  The addition $997.00 comes from CHERUBS CDH Research Fund.

Vote at https://www.facebook.com/questions/10151158907097006

Congenital Diaphragmatic Hernia

Congenital Diaphragmatic Hernia 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.  1600 babies are born with CDH every year in the United States.  Globally, a baby is born with CDH every 10 minutes.

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.


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

CHERUBS LogoCHERUBS is a Guidestar Partner In Trust CharityCHERUBS is the world's first, oldest, and largest CDH non-profit organization.  We are truly a grassroots organization - CDH families creating something out of nothing when there was no other CDH group, information and services in 1995.  CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information.  Our Board of Directors includes CDH parents, grandparents, survivors, nurses, doctors and the world's top CDH researchers. CHERUBS is run solely by volunteers and donations.  At CHERUBS, every CDH family has an opportunity to honor or remember our children while doing good to help others and work together as a CDH community. No other charity in the world has such a respected, educated or experienced group of leaders who care so much about the CDH community.

CHERUBS was not created by one family or for one family.   It was not created in honor or in memory of one child.   It is, and has always been, a group effort to help all families affected by Congenital Diaphragmatic Hernia.   It is built upon the experiences of CDH families, collaborations with CDH researchers and a strong desire to raise CDH awareness through projects and events created in honor and in memory of cherubs.   CHERUBS was named for all the babies lost to Congenital Diaphragmatic Hernia.

We are proud to serve over 4100 families in 54 countries and all 50 states affected by CDH since our creation.   Through our dozens of free ground-breaking services and the friendships made within our member community, CHERUBS has positively affected the lives of 1000's of CDH families and inspired many new CDH charities and project who have followed in our footsteps. We will continue to lead until Congenital Diaphragmatic Hernia is no more. We are devoted to finding the cause, prevention and best treatments for CDH.

Learn more about us through the links to the left.




Top Rated Charity of 2012 by Great Non-Profits



Top Rated Charity of 2012 by Great Non-Profits


Sunday, December 2, 2012

CALL TO ACTION: Ask Your Senators to Support Senate Bill S.3396 for CDH Research


Sen. Sessions joined with Sen. Ben Cardin (D-MD) to introduce legislation this summer to raise public awareness of Congenital Diaphragmatic Hernia (CDH) and place a greater emphasis on medical research to diagnose and treat the disease. Sessions’... grandson, Jim Beau, is a CDH survivor:

"I am honored to introduce this bill today, and am grateful for Senator Cardin’s support. This is a critical issue and early detection and awareness make a dramatic impact in the survival rate. However, more research is needed and this legislation asks the National Institutes of Health to determine whether a greater emphasis can be placed on CDH research within its existing budget."
CHERUBS is so proud to be a part of this historic event, the first step to real help to save the lives of babies born with CDH. 
 
 
 
 
 
 
 
 
 
 
 
 
 
CALL TO ACTION:
 
On July 18, 2012 Senator Jefferson Sessions (R-AL) formally introduced the Congenital Diaphragmatic Hernia Research Bill, co-sponsored by Senator Benjamin Cardin (D-MD).


Please ask your Congressmen to support Senate Bill S.3396
  1. Download Letter (DOC or PDF format) to Send To Your Senator / Congressman. Instructions and mailing addresses included.
  2. Include The CDH Research Bill and a photo of your cherub
  3. Sign the CDH Research Bill petition and ask others to sign as well!
 
 
 
 
 
 

Sunday, November 25, 2012

CALL TO ACTION: Ask Your Senators to Support Senate Bill S.3396 for CDH Research


Sen. Sessions joined with Sen. Ben Cardin (D-MD) to introduce legislation this summer to raise public awareness of Congenital Diaphragmatic Hernia (CDH) and place a greater emphasis on medical research to diagnose and treat the disease. Sessions’... grandson, Jim Beau, is a CDH survivor:

"I am honored to introduce this bill today, and am grateful for Senator Cardin’s support. This is a critical issue and early detection and awareness make a dramatic impact in the survival rate. However, more research is needed and this legislation asks the National Institutes of Health to determine whether a greater emphasis can be placed on CDH research within its existing budget."
CHERUBS is so proud to be a part of this historic event, the first step to real help to save the lives of babies born with CDH. 
 
 
 
 
 
 
 
 
 
 
 
 
 
CALL TO ACTION:
 
On July 18, 2012 Senator Jefferson Sessions (R-AL) formally introduced the Congenital Diaphragmatic Hernia Research Bill, co-sponsored by Senator Benjamin Cardin (D-MD).


Please ask your Congressmen to support Senate Bill S.3396
  1. Download Letter (DOC or PDF format) to Send To Your Senator / Congressman. Instructions and mailing addresses included.
  2. Include The CDH Research Bill and a photo of your cherub
  3. Sign the CDH Research Bill petition and ask others to sign as well!