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.

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.

United Way Day of Caring - Hand Print Kits & Ribbon Assembly!

September 23, 2009 -

A huge thank you to the Thomas Jefferson Area United Way and the Volunteers who came from the University of Virginia Health Services Library who helped assemble 400 Hand Print Kits and about 1,000 Awareness Ribbons on Cards! Also many thanks to PRA International in Charlottesville who donated the Training Rooms as an area to have these volunteers help with these projects.

The Infant Hand Print Kits:


These will go to the University of Virginia's CMC Neonatal Intenstive Care Unit - all families who have a baby admitted at UVA's NICU receive one of these kits to capture their child's small hand print at birth. We also provide a kit in our Expectant / New Parent Packages for families who have a baby diagnosed with congenital diaphragmatic hernia.

Below are a few pictures of the amazing group assembling ribbons on cards.



They also featured their good work and they should here

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!

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

Proverb & Quotes...

"A wise man makes his own decisions, an ignorant man follows the public opinion."

- Chinese Proverb

"Faith is the substance of things hoped for, the evidence of things not seen."- The Bible

"Don't give up. Don't lose hope. Don't sell out." - Christopher Reeve

BREATH OF HOPE SCHOLARSHIP AWARDS PRESS RELEASE

NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY

Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them. - Ralph Waldo Emerson

Text from the Draft of the Resolution/Bill for National Congenital Diaphragmatic Hernia Awareness Day:

Supporting the goals and ideals of a National Congenital Diaphragmatic Hernia Awareness Day to raise public awareness and understanding of The Congenital Diaphragmatic Hernia Birth Defect and to foster understanding of the impact congenital diaphragmatic hernia has on patients and future generations of their families.

_______________________________________________________________________

IN THE SENATE OF THE UNITED

STATES

_______________________________________________________________________

RESOLUTION

Supporting the goals and ideals of a National Congenital Diaphragmatic Hernia Awareness Day to raise public awareness and understanding of the congenital diaphragmatic hernia birth defect and to foster understanding of the impact congenital diaphragmatic hernia has on patients and future generations of their families.

Whereas congenital diaphragmatic hernia (known as “CDH”) is 1 of the most prevalent life-threatening birth defects in the United States, is a severe, often deadly birth defect that has a devastating impact, in both human and economic terms, it affects equally people of all races, sexes, nationalities, geographic locations, and income levels;

Whereas congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics), this translates to approximately 1,800 live births with the congenital diaphragmatic hernia birth defect. Countless additional friends, loved ones, spouses, and caregivers must shoulder the physical, emotional, and financial burdens congenital diaphragmatic hernia causes;

Whereas congenital diaphragmatic hernia which there is not a genetic indication, or anything that could predict this birth defect other than ultrasound during pregnancy there is no consistant treatment or cure, is a leading cause of neonatal death in the United States;

Whereas fifty percent of those patients that do survive the congenital diaphragmatic hernia birth defect have residual issues, causing a severe strain on pediatric medical resources and on the delivery of health care in the United States;

Whereas proactive diagnosis and appropriate management of fetuses with congenital diaphragmatic hernias minimizes the incidence of emergency situations, dramatically improving survival rates;

Whereas neonatal medical care is one of the most expensive care in the United States and congenital diaphragmatic hernia neonate stays average of sixty to ninety days in intensive care, costing millions of dollars, utilizing blood from local blood banks and requiring the most technically advanced medical care;

Whereas congenital diaphragmatic hernia is a birth defect that causes damage to the lungs and the cardiovascular systems, patients may have long-term sequele such as respiratory insufficiency, gastroesphgeal reflux, poor growth, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities;

Whereas the severity of the symptoms, outcomes and results of congenital diaphragmatic hernia and the limited public awareness of the birth defect cause many patients to live with substandard care and forego regular visits to their physicians or to avoid following good health management or therapeutic management which would help avoid more severe complications when in the future and compromises the quality of life;

Whereas people and families who have chronic, life-threatening diseases and birth defects or care for those who do, similar to congenital diaphragmatic hernia have a predisposition to depression and its resultant consequences due to their anxiety over pain, suffering, and premature death;

Whereas the Senate and taxpayers of the United States desire to see treatments and cures for disease and would like to see results from investments in research conducted by the National Institutes of Health (NIH) and from such initiatives as the NIH Roadmap to the Future;

Whereas congenital diaphragmatic hernia is a verifiable example of how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate therapeutic interventions that directly benefit congenital diaphragmatic hernia sufferers and their families, save billions of Federal dollars under Medicare, Medicaid, and other programs for therapies, early intervention and increased survival rates;

Whereas improvements in diagnostic technology and the expansion of scientific knowledge and management of care of congenital diaphragmatic hernia have increased the survival rates in some of these cases, there needs to be more research and awareness of this birth defect to increase the funding needed give a better quality of life to those who survive and more optimism to the families and health care professions who work with these children first hand;

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

Whereas these volunteers engage in an annual national awareness event held during the month of March and more specifically the 31st Day of March, and such a month or day would be an appropriate time to recognize National Congenital Diaphragmatic Hernia Awareness Day:

March 31st therefore, be it Resolved, That the Senate—

(1) designates the day of March 31, as ``National Congenital Diaphragmatic Hernia Awareness Day'';

(2) supports the goals and ideals of a national day to raise public awareness and understanding of congenital diaphragmatic hernia (known as ``CDH'');

(3) recognizes the need for additional research into a cure for congenital diaphragmatic hernia; 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 congenital diaphragmatic hernia and to foster understanding of the impact of the disease on patients and their families.

_______________________________________________________________________

RESOLUTION

Supporting the goals and ideals of a National Congenital Diaphragmatic HerniaAwareness Week to raise public awareness and understanding of Congenital diaphragmatic hernia and to foster understanding of the impactCongenital diaphragmatic hernia has on patients and future generations of their families.

_______________________________________________________________________

National Congenital Diaphragmatic Hernia Awareness Day 2010

We just received verbal confirmation that a Senior Senator has agreed to help sponsor the Congenital Diaphragmatic Hernia Awareness Day Bill. This does not mean that we are not continuing to ask folks to help by writing their Congress person - we need as many contacted as possible! We have Sample Letters and the Sample Bill available. If you would like to help - please contact cdhawareness@breathofhopeinc.com

Also - we are continuing to paint each state Turquoise - so if you would like to request your Governor issue a Congenital Diaphragmatic Hernia Awareness Day Proclamation we have Sample Letters and Proclamations for that too! We also have Sample Proclamations for Mayors to have your city or town issue a Proclamation. Please feel free to contact us at cdhawareness@breathofhopeinc.com

(No you don't have to be a "member" of Breath of Hope - all we ask is you let us now when you send this in and who too - if you get a Proclamation - just take a picture or scan of it and send it to us! You keep the Proclamation! Or give it to a loved one who was affected by CDH or a Hospital who does wonderful work for CDH Families!)

Thank you!

And in the end, it's not the years in your life that count. It's the life in your years. - Abraham Lincoln

Map of Congenital Diaphragmatic Awareness Day Proclamations Issued

States colored Turquoise issued Proclamations for March 31, 2008 and/or March 31, 2009.

We will also be working on a Bill to go through Congress to have March 31 to be the National Congenital Diaphragmatic Hernia Awareness Day.

States will each year have to have requests - if you would like to have a Sample Letter and Proclamation, please email us at cdhawareness@breathofhopeinc.com

If you know a Senator or a member of the House of Represenatives who will help us by sponsoring the Bill, please also contact us at the above email address!

Our goal is to turn this whole map Turquoise!

Every Breath They Take Is Our Breath of Hope...

Estimated Birth Rate of Congenital Diaphragmatic Hernia Worldwide

The world’s population low estimate is 6 billion. The world birth rate is about 20 per 1000 which would make the number of births every given year at 12,000,000. (You divide 6 billion by 1000 and multiply by 20.) So – with 12 million babies born every year in the world, if CDH has a rate of 1 in 3,000 – this would be 40,000 born with congenital diaphragmatic hernia in the world every day – again an estimate. (You take 12 million and you divide that by 3000 to get 40,000).


This means in ten years there are 400,000 infants born with congenital diaphragmatic hernia and the death rate for these children is 50% so 200,000 die in 10 years. (Multiply 40,000 by 10.)


Each day in this world approximately 109 babies are born with CDH. About 4 babies an hour are born with CDH in the world every day. (Divide 40,000 by 365 – days in a year you get 109.5… then you divide 109 by 24 – hours – and that is 4 rounded.)


Meanwhile, Muscular Dystrophy has a rate of 1 in 6,000 births for the congenital form of this disease. They have Jerry Lewis and a Telethon that earns 65 million dollars for research. MD deserves this funding and recognition.



So does congenital diaphragmatic hernia.

Breath of Hope - What Support is About...

I'll lean on you and you lean on me and we'll be okay. --Dave Matthews Band

Life throws everyone a curb. It happens every day. No one can do it alone. When families are devastated by a diagnoses of congenital diaphragmatic hernia we know it can take many different paths. No two cases are exactly alike. Some of these children survive with little complications, some minor, some have a variety of issues that they outgrow or overcome. Then there are some who struggle, who have so much to overcome and still they choose wings over feet.

The families lean on one another for inspiration, information and understanding. Many times, the only people who truly know what you have been through are those who have been there themselves.

The First Congenital Diaphragmatic Hernia Awareness Ribbon

This was the first Awareness Ribbon created by Denise in May 2006. There was thought that the colors of black and yellow would infringe upon the Yellow Ribbon (Waiting for the return of a loved one - Military) and the Black Ribbon which is a symbol of mourning. Later, Breath of Hope adopted the color of Turquoise for our Logo and then for the ribbon for the Congenital Diaphragmatic Hernia Awareness Campaign.


A lie has speed, but truth has endurance. --Edgar J. Mohn

Peyton's Promise - Run - Walk May 16th

Peyton's Promise

2009 Family Fun 5K Run/2K Walk

Please bring your family out for a day of fun and help us raise money for babies born with CDH.

Date: Saturday, May 16, 2009

Registration Time: 9:30

Race Start: 11:00

Location: JFK and Promenade, Sea Isle CityPrice:

Adults $25 (pre-registration by May 6th $20)

Kids aged 5-12: $10, Kids under 5: Free!

*additional donations are welcome*If you can not make the race, but would like to make a donation, please send checks to Peyton's Promise, PO Box 122, Sea Isle City, NJ 08243.

National Nurses Day - May 6, 2009

Nursing is an art: and if it is to be made an art, it requires an exclusive devotion as hard a preparation, as any painter's or sculptor's work; for what is the having to do with dead canvas or dead marble, compared with having to do with the living body, the temple of God's spirit? It is one of the Fine Arts: I had almost said, the finest of Fine Arts. ~Florence Nightingale

Thank you to all the nurses out there who truly deserve this day!

From all of us at Breath of Hope

Quote for Monday...

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light from within."

~ Elizabeth Kubler-Ross ~

Commonwealth of Virginia Proclamation

Kim Weiss Photography - CDH Awareness Day Photos...

A wonderful photographer was at Saint Louis Children's Hospital - Kim Weiss and she posted photos and her impression of the day - Titled: did you know? [St. Louis Child Photographer] Click there to go see the amazing work she does.

Congenital Diaphragmatic Hernia Awareness Day - March 31, 2009 - In the News!

Link to the Presentation at Saint Louis Children's Hospital today:

http://www.ksdk.com/news/health/story.aspx?storyid=171206&catid=9

(Grab a box of tissues!)

Link to story in Charlottesville, Virginia's Daily Progress

Another amazing article featuring Tiffany ^Cadan's^ Mommy http://www.whig.com/printerfriendly/tiffany-frericks---MON

Associated Press Stories today:

http://www.bnd.com/336/story/711244.html

http://www.google.com/hostednews/ap/article/ALeqM5gkL_zzDl9RzIfJneI8nxx2PyDQzgD97987E00

And a Blood Drive today in Indiana

CDH Families, doctors, nurses are amazing!

There is no foot too small - to leave an impact on this world!

2009 State of Mississippi - Congenital Diaphragmatic Hernia Awareness Day Proclamation

Thank you Marsha!