Congenital Diaphragmatic Hernia Awareness - What it Takes

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. --Margaret Mead

Now go here and sign to send your Representatives an email letter (you can edit) supporting a National Congenital Diaphragmatic Hernia Awareness Day for March 31, 2010.


You can also email us to get a Sample Letter (you can also edit) and Sample Proclamation to send your State Governor and Mayor to have your state or city issue a Proclamation for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day in your area!
boh@breathofhopeinc.com

Community Congenital Diaphragmatic Hernia Awareness Campaign

Why focus in your community? Does everyone in the area you live know about CDH? With the Senate Resolution in Congress right now – there is a stepping stone to make them aware. Writing your Mayor, City Council Members, County Board and Governor to request March 31 to be Congenital Diaphragmatic Hernia Awareness Day is the first step. (Contact us if you want the sample letters to send!)

In March, I was amazed by how many within my area that had been affected by CDH but never knew – Awareness Day and the article that I was interviewed for motivated other survivors to contact us. Some were silent for a long time because they believed CDH was rare, when it truly isn’t.

In my area – Breath of Hope will be participating in the United Way Day of Caring on September 23, 2009. We will have volunteers help assemble handprint kits from tins, labels, Paris of plaster and some work to be donated to the University of Virginia’s Children’s Medical Center NICU. Each family will receive a handprint kit who has their infant admitted to the NICU there. The extra we assemble will go into our Expectant Parent Packages which we have distributed since 2006.

Next March we hope to have more events in my area – grocers who will donate their sales on March 31, a Walk/Run and a Wine Tasting is in the works.

What can you do in your area to help promote awareness of this birth defect? What stores do you visit? Would they go Turquoise for the Day? Hold a fundraiser to either benefit Breath of Hope or a local hospital? Would you like to assemble hand print or foot print kits for your local hospital? Now is the time to plan!

How about educating in your local schools? You can talk of the birth defect and make so many aware, children tell their parents (sometimes) about something new they learned. For older children – the legislative process of obtaining an Awareness Day might fall in line with Social Studies Teaching. How does a Resolution or a Bill become law? All sparked by a few determined parents who dared to make a difference.

If you need help, have ideas and need insurance for these events – please feel free to contact us. We have several documents to help promote your events and many ideas that might make it easier, more efficient and fun. We would be thrilled to help in any way we can to promote your community event. Awareness started at home – now spread it to your community!

Contact us at cdhawareness@breathofhopeinc.com or boh@breathofhopeinc.com

P.S. Is appropriate for this – because this was inspired by the events which the Parker Reese Foundation has listed out there for their fundraisers and events. We will of course try to work around their events but also when you are in other communities the dates and times do not infringe on one another. The more out there – the more we make others aware!

New Updated Congenital Diaphragmatic Hernia Awareness Day Image on Cafepress

New for Awareness Day now available at: http://www.cafepress.com/breathofhope/6850646

Congenital Diaphragmatic Hernia (CDH) Awareness - Breath of Hope Website

Our website Congenital Diaphragmatic Hernia (CDH) Awareness - Breath of Hope, Inc has been updated. We have gone from six (6) pages to twenty-five (25) including this blog as a "Page" on the website.

In order not to duplicate information on the blog and on the website we will be streamlining this blog a little bit.

One page, Community Links, is "Soon to Come" we want to have blogs and websites from all those out there who have had children or been touched by CDH listed there. Please email us at boh@breathofhopeinc.com if you would like your blog or website listed.

We will also be offering Ad Space (subject to approval of our Board of Directors) on the site in an effort to support the website expenses, program expenses and medical research that may benefit congenital diaphragmatic hernia.

Much of the information on the website added was taken from our printed materials so it has been reviewed by doctors and staff at the University of Virginia Medical Center Children's Medical Center. We also have had many parents, other health care professionals and outsiders review our materials and we have taken their suggestions to improve our materials for all.

Steve Berry of Denver Website Design originally took the website from a Flash Website to include more. A month ago he came to us saying he wanted to help us take it to a new level of functionality. We believe he has in this latest renovation. This new site, we will be able to update ourselves and add pictures to all the scrolls of the site. We want to thank Steve for his donation in-kind for a good portion of work that was done and is still doing to work out all the backend kinks!

As always - if anyone has any suggestions, we welcome them!

Parental Perceptions of Social Support

If you are in the Texas Area - there is a Research Study we would like to help recruit families to participate. Please contact the email addresses provided.



June 21, 2009

Dear Parents:



We know that social support is vital for parents who have a chronically or critically ill child in the Intensive Care Unit. As an undergraduate student in the honors program with a major in Psychology at Austin College, I am interested in understanding more about the types of support that are most helpful to parents when they have a child in the ICU. Currently I am working on a project for my senior thesis titled, Parental perceptions of social support: An investigation of what types and sources of social support are perceived as most helpful when a child is in the intensive care unit, where I plan to examine what different sources and types of social support parents see as being more or less helpful in coping with the stress of having a sick child. This project has been approved by the Institutional Review Board at Austin College. The purpose of this letter is to request your participation in the project.



In order to participate in this project, I need both parents involvement. In the past, much of the research has only focused on the experiences of mothers. For this project, I want to make sure to include both mothers and fathers. Your participation will involve one face-to-face interview with the mother and a separate face-to-face interview with the father. Each interview will last approximately 1 hour. In order to make it as convenient as possible, I will come to your desired location on a day and time that works best in your schedule. I ask that spouses not talk to each other between the interviews about anything said in the individual interview, so that you will not be influenced by what the other one said. Once both interviews have been completed, you may talk about the interview. The interviews will be tape-recorded. The tape-recording is necessary for participation in the project. It will be used to ensure that the researcher gets all of information written down accurately. The tapes will be transcribed so that sources and types of support can be accurately coded. When the tapes are transcribed, any information that could be used to identify you personally (such as names) will be removed to protect your privacy.



In addition to the interview, I will need one parent to complete a short background questionnaire. This questionnaire should not take more than 10minutes to complete.



All information will be kept confidential. No names will be used in the research. Each tape and questionnaire will be assigned a corresponding identification number that will be used instead of a name. The tapes and the questionnaires will be kept in separate locked filing cabinets in my advisor's office. Only my advisor, my research assistant, and I will have access to the raw data. In accordance with standard research guidelines, tapes and transcriptions will be stored in a secure file cabinet for seven years. After seven years, they will be shredded.



While I do not believe there is any risk to you in participating in this project, discussing the time a child spent in the hospital can bring up painful memories. If at any time during the interview you become upset and would like to stop, please let me know. We can stop the interview at anytime. Benefits of participating in this project are helping researchers identify sources of social support that were the most helpful and least helpful to parents who had a child in the ICU, in order to help hospitals reduce the stress of parents in this difficult situation. Participation is on a volunteer basis, and you may withdraw your consent at any time without penalty. When the study is completed, a brief summary of our findings will be provided to you upon request. Thank you for your time. You are welcome to e-mail Caitlin Tabor atctabor@austincollege.edu or my advisor, Dr. Jill Schurr at jschurr@austincollege.edu with any questions or concerns.



Sincerely,

Caitlin E. Tabor

Undergraduate Student

Jill K. Schurr, Ph.D., Advisor

Senate Resolution 204 - National Congenital Diaphragmatic Hernia Awareness Day

SRES 204 IS
111th CONGRESS
1st Session
S. RES. 204
Designating March 31, 2010, as ‘National Congenital Diaphragmatic Hernia Awareness Day’.
IN THE SENATE OF THE UNITED STATES
June 24, 2009
Mr. VITTER submitted the following resolution; which was referred to the Committee on the Judiciary
RESOLUTION
Designating March 31, 2010, as ‘National Congenital Diaphragmatic Hernia Awareness Day’.
Whereas the congenital diaphragmatic hernia birth defect is one of the most prevalent, life-threatening birth defects in the United States;

Whereas the congenital diaphragmatic hernia birth defect is a severe, often deadly birth defect that has a devastating impact, in both human and economic terms, affecting equally people of all races, sexes, nationalities, geographic locations, and income levels;

Whereas the congenital diaphragmatic hernia birth defect occurs in 1 in every 2,000 live births in the United States and accounts for 8 percent of all major congenital anomalies;

Whereas, in 2004, there were approximately 4,115,590 live births in the United States, and in approximately 1,800 of those live births, the congenital diaphragmatic hernia birth defect occurred, causing countless additional friends, loved ones, spouses, and caregivers to shoulder the physical, emotional, and financial burdens the congenital diaphragmatic hernia birth defect causes;

Whereas there is no genetic indicator or any other indicator available to predict the occurrence of the congenital diaphragmatic hernia birth defect, other than through the performance of an ultrasound during pregnancy;

Whereas there is no consistent treatment or cure for the congenital diaphragmatic hernia birth defect;
Whereas the congenital diaphragmatic hernia birth defect is a leading cause of neonatal death in the United States;

Whereas 50 percent of the patients who do survive the congenital diaphragmatic hernia birth defect have residual health issues, resulting in a severe strain on pediatric medical resources and on the delivery of health care services in the United States;

Whereas proactive diagnosis and the appropriate management and care of fetuses afflicted with the congenital diaphragmatic hernia birth defect minimize the incidence of emergency situations resulting from the birth defect and dramatically improve survival rates among people with the birth defect;
Whereas neonatal medical care is one of the most expensive types of medical care provided in the United States and patients with the congenital diaphragmatic hernia birth defect stay in intensive care for approximately 60 to 90 days, costing millions of dollars, utilizing blood from local blood banks, and requiring the most technically advanced medical care;

Whereas the congenital diaphragmatic hernia birth defect is a birth defect that causes damage to the lungs and the cardiovascular system;

Whereas patients with the congenital diaphragmatic hernia birth defect may have long-term health issues such as respiratory insufficiency, gastroesophageal reflux, poor growth, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities;

Whereas the severity of the symptoms and outcomes of the congenital diaphragmatic hernia birth defect and the limited public awareness of the birth defect cause many patients to receive substandard care, to forego regular visits to physicians, and not to receive good health or therapeutic management that would help avoid serious complications in the future, compromising the quality of life of those patients;
Whereas people suffering from chronic, life-threatening diseases and birth defects, similar to the congenital diaphragmatic hernia birth defect, and family members of those people are predisposed to depression and the resulting consequences of depression because of anxiety over the possible pain, suffering, and premature death that people with such diseases and birth defects may face;

Whereas the Senate and taxpayers of the United States want treatments and cures for disease and hope to see results from investments in research conducted by the National Institutes of Health and from initiatives such as the National Institutes of Health Roadmap to the Future;

Whereas the congenital diaphragmatic hernia birth defect is an example of how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate therapeutic interventions that directly benefit the people and families suffering from the congenital diaphragmatic hernia birth defect;

Whereas collaboration, technological innovation, scientific momentum, and public-private partnerships can save billions of Federal dollars under Medicare, Medicaid, and other programs for therapies, and early intervention will increase survival rates among people suffering from the congenital diaphragmatic hernia birth defect;

Whereas improvements in diagnostic technology, the expansion of scientific knowledge, and better management of care for patients with the congenital diaphragmatic hernia birth defect already have increased survival rates in some cases;

Whereas there is still a need for more research and increased awareness of the congenital diaphragmatic hernia birth defect and for an increase in funding for that research in order to provide a better quality of life to survivors of the congenital diaphragmatic hernia birth defect, and more optimism for the families and health care professionals who work with children with the birth defect;

Whereas there are thousands of volunteers nationwide dedicated to expanding research, fostering public awareness and understanding, educating patients and their families about the congenital diaphragmatic hernia birth defect to improve their treatment and care, providing appropriate moral support, and encouraging people to become organ donors; and

Whereas volunteers engage in an annual national awareness event held on March 31, making that day an appropriate time to recognize National Congenital Diaphragmatic Hernia Awareness Day: Now, therefore, be it

Resolved, That the Senate—

(1) designates March 31, 2010, as ‘National Congenital Diaphragmatic Hernia Awareness Day’;

(2) supports the goals and ideals of a national day to raise public awareness and understanding of the congenital diaphragmatic hernia birth defect;

(3) recognizes the need for additional research into a cure for the congenital diaphragmatic hernia birth defect; and

(4) encourages the people of the United States and interested groups to support National Congenital Diaphragmatic Hernia Awareness Day through appropriate ceremonies and activities, to promote public awareness of the congenital diaphragmatic hernia birth defect, and to foster understanding of the impact of the disease on patients and their families.

National Congenital Diaphragmatic Hernia Awareness Day

On June 24, 2009, S.RES.204 Title: A resolution designating March 31, 2010, as "National Congenital Diaphragmatic Hernia Awareness Day". Sponsor: Sen Vitter, David [LA] (introduced 6/24/2009) Cosponsors (None) Latest Major Action: 6/24/2009 Referred to Senate committee. Status: Referred to the Committee on the Judiciary. LINK HERE

The text of this document has not changed much from the original Breath of Hope, Incorporated submitted to Senator Vitter LINK HERE

Please feel free to email us at boh@breathofhopeinc.com or cdhawareness@breathofhopeinc.com if you would like to use our sample letter as a guideline to write your State Senator.

CDH Medical Research Study

Baylor College of Medicine

Daryl A. Scott, MD/PhD

Mail Stop: BCM 227

One Baylor Plaza

Houston, TX 77030

E-mail: dscott@bcm.tmc.edu

http://www.bcm.edu/genetics/?pmid=11041

Dr. Scott and researchers in his laboratory are working to identify the genes that cause CDH. A brief description of his research can be found at http://www.bcm.edu/genetics/facultyaz/scott.html. Families interested in learning more about participating in genetic studies aimed at identifying the genes that cause CDH can contact him via e-mail at dscott@bcm.tmc.edu.

Happy Father's Day from Breath of Hope

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much the old man had learned in seven years. - Mark Twain

By the time a man realizes that maybe his father was right, he usually has a son who thinks he's wrong. - Charles Walsworth

I cannot think of any need in childhood as strong as the need for a father's protection.

- Sigmund Freud

When a father gives to his son, both laugh; when a son gives to his father, both cry.

- Jewish Proverb

A PHONERAISER FUNDRAISER

Want to help us raise funds without spending anything? No cost to you - just a bit of time - as much or as little as you want to give!

We will be collecting used cell phones, i-phones - even if they are broken and ink jet cartridges (size of your hand, please)! Keep them out of our landfills and Breath of Hope will have them recycled to continue to support CDH Families!

The economy is still in a rut - this is a way you can donate without it cutting into your budget! You can collect them at work, church, baseball, soccer or any other youth type event! Meanwhile you can spread some CDH Awareness! It is a guarantee someone will ask you what CDH is!

We are not asking for donations of funds - but of something others might just throw away and it is not safe for cell phones or ink jet cartridges to go into our landfills! They pollute the water, air and soil. So - you will be helping the environment AND helping a fundraiser!

If you want to help - please contact us at cdhawareness@breathofhopeinc.com

We have Press Releases, promotional emails you can send or letters to businesses or others. We have a price list and we have a donation receipt you can print off and give to those who request it!

How do you send them once you have collected them? A shipping label will be given to you - it costs you nothing! Please not just one or two phones - at least 5 or more collected - we don't want this business to pay $8 for one phone shipped to them!

You call the shipper and they pick up and take it away! It is that simple!

Please contact us at cdhawareness@breathofhopein.com if interested in helping us raise awareness, funds and recycle items that would otherwise pollute the environment!

Regards,
Breath of Hope