For A Breath of Hope - CDH Awareness

Today, there was a very special event in Virginia.  Emma above was born, undiagnosed with CDH on March 31, 2010.  Her family paid it forward by having a wonderful event to help benefit Breath of Hope and so we can further help support families and support research efforts for CDH.  Click here for the link to the article that ran in The News-Gazette Paper.  The reporter, Claudia Schwab was at the event today taking notes - so there may be a follow up article!  Thank you to this amazing family. 

This picture is of the CHOP SDU decked out in their Turquoise - and from what we have heard - all CDH babies received onsies in the same style!  (Thank you Dr. Hedrick!)  

And here is Saint Louis Fetal Care staff in their turquoise on March 31st too!

This was just an awesome picture shared!

This is Emma making sure the Proclamation from Beuna Vista is correct!  So serious!

If you have pictures of you in turquoise - you would like to share - please feel free to contact us!  We love this.  We sincerely hope the hospitals out there promoting CDH Awareness Day received significant donations for their research.  That is the result we hope Congenital Diaphragmatic Hernia Awareness Day would have - to bring dollars to research to find answers - and to give hope!

Turning Heartbreak Into Action

Kathleen and James were expecting twin girls and one had congenital diaphragmatic hernia.  They relocated to have the twins at The Children's Hospital of Philadelphia.  Unfortunately, Allisyn Grace chose wings instead of feet.  This hasn't stopped her parents to take action and educate others and now fundraise to further medical research for the hospital that tried to save Allisyn Grace's life. 

The Texas Roadhouse in Logan, Utah between 4 PM - 10 PM will be helping, please consider going there if you are in the area on Thursday, March 31st.  Click here to read more.

July 10th - Zumba for Congenital Diaphragmatic Hernia Awareness!

Thank you Sara (Joey's Mom) for organizing this event!

First Annual CDH Walk of Hope - March 27, 2010

There is an amazing family that was touched by congenital diaphragmatic hernia.  There are many amazing families who have been touched by CDH.  This entry is about one in the thousands that have been.  In their grief, they have made their way by trying to do something to help others.  All of them.  We know families can be puzzles of pieces that sometimes just don't fit from time to time but this family has come together to have a special event. If you are in the area - pleas considering attending this event - and walking to celebrate the families affected by CDH.

1st Annual
CDH Walk of Hope
March 27th

1 Mile Walk

Saturday, March 27th Lampe Park Gardnerville, NV

$20 Advanced Registration by March 13th $25 Day of Walk

Walk Starts @ 8:30am-12pm Raffle Prizes $1ea or 6 for $5

To register please mail cash or check to Shannon Minder
106 Mill Creek Drive Coleville, CA 96107
or online at www.active.com
More information contact Shannon 530-208-6421

MJ is very proud of them!

Vermont has issued their Proclamation for March 31st to be Congenital Diaphragmatic Hernia Awareness Day!

Thank you Tiffany, Syren's Mommy!

It is beautiful!  Not as beautiful as these children but close!

For Our Turquoise Warriors!

Available at the Carepress Store here - if you go to the store, it is less than going out to the Cafepress Marketplace! 

Whole Foods Market - Nickles for Nonprofits

This January 2010, Breath of Hope will be one of the charities (of two) who will benefit from the Charlottesville, Virginia's location Nickles for Nonprofits.

Whole Foods in Charlottesville has launched a new program to assist local non-profits. When you bring back your reusable bags, you receive a nickle back. You have the option to take that nickel off your bill or better yet receive a wooden nickel and give it to a non-profit. There is a box located in the front of our store to hold these wooden nickels and they are real add up! Please be a supporter of our local non-profits groups. It's an easy way to help agencies that help our community.

Whole Foods Market carries Natural and Organic products and does wonderful things in each community they serve. We thank them for this opportunity!

2010-2011 Breath of Hope Scholarships

BREATH OF HOPE – SCHOLARSHIP INFORMATION

Breath of Hope, Inc. is offering five scholarships for a one time payment to institution of higher learning for tuition and books for scholarship winners. These scholarship awards were made possible though Breath of Hope’s Congenital Diaphragmatic Hernia Awareness® Day Campaign and a grant from GMAC Financial.

1. Miracle Scholarship – for a survivor of the congenital diaphragmatic hernia birth defect.

2. Hope Scholarship – for any family member of a child who had a congenital diaphragmatic hernia birth defect.

3. Faith Scholarship – for anyone who is going into or furthering their education in Nursing

4. Beyond Measure Scholarship – for anyone who will be furthering their education to become a Medical Doctor.

5. Wisdom Scholarship – for those furthering their education in PhDs, or any graduate degree which would further the research, care and awareness of congenital diaphragmatic hernia.

Each scholarship is a one time payment of $1,000 and will be sent to the institution of higher learning the recipient will or is attending. As with any scholarships, we request all funds are for the tuition and/or books for the recipient’s education and if the recipient is unable to use the funds that they are returned to Breath of Hope so that the funds can be reinvested to continue to benefit future scholarships.

Scholarship Applications are being accepted now and will be reviewed in May 2010 to be awarded by August 31, 2010 for the 2010-2011 academic school year. Complete packets must be received by Breath of Hope by April 30, 2010 in order to be reviewed and awarded on this timeline.

Please feel free to email us at boh@breathofhopeinc.com for the application and further instructions. To see the list of recipients for the 2009-2010 awards please click here.

Merry Christmas from Breath of Hope

There's more, much more, to Christmas than candlelight and cheer; It's the spirit of sweet friendship That brightens all year. It's thoughtfulness and kindness, It's hope reborn again, For peace, for understanding, And for goodwill to men!

Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.

- Norman Vincent Peale

Remember, if Christmas isn't found in your heart, you won't find it under the tree.

- Charlotte Carpenter

What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace. - Agnes M. Pharo

Merry Christmas!

CDH Awareness Day - A Grassroots Effort

When Breath of Hope started the Congenital Diaphragmatic Hernia Awareness Day^® Campaign in July 2007, our Board of Directors each wrote a letter and supplied a sample proclamation to their respective state Governors. There is room in the letters for those affected by congenital diaphragmatic hernia to share their stories. We didn’t know if it was going to work. my letter was sent to Governor Tim Kaine. We started to get Proclamations in from other states in the United States . Those of us who had sent in letters and not received proclamations wondered why our states were not responding. Several of us called our Governors' offices and we were told they don’t issue them until a few months prior to the day of the request and was assured that it would be honored.

Later, I was called in February 2008 and told that congenital diaphragmatic hernia covered several other birth defects and they were thinking of doing a Proclamation in Virginia to cover all Birth Defects. (That includes birth marks, correct?) - I felt defeated. I also felt elated because we had 31 states issue Proclamations and Resolutions for March 31, 2008 to be Congenital Diaphragmatic Hernia Awareness Day.

The empowerment that it gives people that a simple request can make a day to honor these families, memorialize the angels lost to this devastating birth defect and also educate the general public to this very common birth defect that is rarely heard of. There is nothing rare with CDH – it affects just as many families as spina bifida, cystic fibrosis, congenital muscular dystrophy and other birth defects which have long received more attention.

Every day 5 families are diagnosed in the US alone. Truly this is a low estimate based upon figures out there because how many are not counted because their families chose to birth early, they were stillborn or they didn’t make it to surgery? Many states do not take accurate data on disease and birth defects. (We are seeing that with reported H1N1 cases in the US now.) This is something that also needs to change and is part of the platform of raising awareness for congenital diaphragmatic hernia.

In early 2009, while checking the Commonwealth of Virginia ’s website and reviewing the Resolutions for 2008, among them was “Congenital Heart Defects Awareness Day”. Now, it is wonderful to have a day because heart defects also need awareness too! Children who are born or diagnosed with CDH sometimes also CHD but congenital heart defects encompass several different birth defects of the heart too. It was then I contacted the Governor’s Office again and also sent in another letter and sample proclamation. I was referred to the Commonwealth of Virginia ’s Bureau of Vital Statistics. I heard back from two amazing women one who asked me “What do you think causes congenital diaphragmatic hernia?” I was taken aback from that question but she explained she likes to hear what parents think. (I liked that too!) These ladies referred me to the Executive Assistant to our Secretary of Health for Virginia . He called me back and told me to send him an email with the information and I did.

After Awareness Day – March 31, 2009 passed – I figured I would fight again for 2010 in Virginia. I then received the Resolution, signed by Governor Tim Kaine. I had long made a promise that this Proclamation would be framed and given to the University of Virginia Medical Center NICU . They deserved this acknowledgement for one of the many birth defects they are on the front lines battling every day. Apparently the University of Virginia also thought this was a good thing since it was featured here in their LINK Newsletter.

I imagine I felt as many did when they received this simple piece of paper, empowered that I had actually done something to make a difference and here was proof. It didn’t have my name on it, or my child’s name either – but it carried with it all the names of all the families who have been affected by CDH and those who help them.

One thing about the families of congenital diaphragmatic hernia – we all are tenacious and determined in our causes and fights. By directing that energy to something that does make a difference – and will make more aware of this birth defect – that gives us hope. Hope that one day the survival rates through research will increase, hope that the children surviving CDH will have more access to medical and therapeutic care that will assist them in having less residuals and an even higher quality of life. These families need that. We as a society need this because the better care, the more we know the less suffering.

Well, what does a day do? Sure, there are Proclamations and Resolutions issued by states and our congress we often wonder why but it does make us more aware and the politicians who vote for medical funding to be diverted to studies to know about congenital diaphragmatic hernia. Would you vote to have funds directed to a birth defect for research if you had no idea what it was? Some would but many would like to know more about what they are voting for and what sort of impact it could make to society and medicine. We know these doctors, nurses and therapists who work on the front lines, shoulder to shoulder with the parents are equally as frustrated and devastated with this birth defect.

An Awareness Day brings notice to these politicians. Senator Clinton was handed a brochure from Breath of Hope during her campaign, and she was impressed that a Proclamation was issued in Iowa . (Thanks to Terri, Ava’s Mommy, who wrote her governor and also handed that brochure to then Senator Clinton).This is a truly grassroots effort of parents, friends, family and medical professionals pushing forward to making a difference. If you would like to join us in this fight to make a difference, please contact us at cdhawareness@ breathofhopeinc. com and we will be thrilled to send you the information to send on to your Governor or Mayor. If you wonder what you can do on this day to bring attention, honor these families please contact us – it can be something as simple as a candle ceremony in your home or church or as big as a press conference that generated thousands of dollars to Medical Research to benefit congenital diaphragmatic hernia which was picked up by the Associated Press – or something in between.

Cadan's Halloween Carnival - Fundraiser for Congenital Diaphragmatic Hernia (CDH) Research

Oct. 25th, 2009 will be the first annual Halloween Carnival from 2-6 at the Knights of Columbus in Quincy, IL. There will be plenty of entertainment for both adults and children. All of the proceeds will go towards CDH research at Saint Louis Children's Hospital!

In Memory of a beautiful baby boy who has inspired so many - and will make an impact on the future of research of congenital diaphragmatic hernia!

Cadan's Cause on Facebook!

Interesting Quote ...

Who indeed can harm you if you are committed deeply to doing what is right? - I Peter

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

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.