Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Tuesday, December 30, 2008

Friday, December 26, 2008

Congenital Diaphragmatic Hernia Awareness Day 2009

Would you like to truly help with congenital diaphragmatic hernia? In 2008, there were thirty-one states out of fifty in the United States that issued Proclamations declaring Congenital Diaphragmatic Hernia Awareness Day on March 31, 2008. There were over a dozen towns and cities that also issued Proclamations.

In order to generate more research for Congenital Diaphragmatic Hernia there must be awareness. Where does one think all the funding for research is obtained? Our government funds research programs - all of them do across the world. We must make them aware that this birth defect occurs just as often as others they are funding. Before the Pink Ribbon Campaign for Breast Cancer, there wasn't much research or funding to help improve lives or help fight Breast Cancer. Today there is and there is a whole month of Breast Cancer Awareness.

All Proclamations issued are kept by those who receive them, Breath of Hope only asks for you to confirm you mailed it and where you mailed it or emailed your request and if you could send us a picture or a scan of the Proclamation.

In 2009 we hope to have all 50 States! In 2010 we want a Congressperson to sponsor a Bill to make a perpetual Awareness Day for Congenital Diaphragmatic Hernia! The more that write, obtain Proclamations, the more we make people aware of this devastating birth defect which still kills half of those affected.

Please feel free to contact us at cdhawareness@breathofhopeinc.com to receive the Sample Letter, Sample Proclamation and other materials that you can send to your Mayor or Governor. If you are outside the US, you can write your equivalents in your country too. You can also contact me at elizabeth@breathofhopeinc.com

Grass roots campaigns like this work! Politics aside - we are witness to our election here this past year where it was a grass roots effort which proved victorious.

Wednesday, December 24, 2008

Merry Christmas from Breath of Hope


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 ("What Is Christmas")

Friday, December 19, 2008

A Gift of Congenital Diaphragmatic Hernia Awareness for The Hard to Buy for!

This is shameless donation promotion but this is what we can do for you if you are stuck for a last minute gift. Donate (any amount) and we will be happy to email you an acknowledgment letter you can print off and place in an envelope for that hard to buy for person!

We can even email them if they are far away! The recipient of this "gift" doesn't know the amount you donated - just that you made a generous donation to a Public Charity in their name!

And you have the satisfaction of giving - two fold.

We can even provide exactly WHAT DONATIONS DO AT BREATH OF HOPE:

  • Your donation of $10 will provide a grieving family with information to help them through this tragic life-changing event.
  • Your donation of $15 will provide an expectant family with a blanket to wrap their CDH baby in as well as a hand print to keep as a memento of their child's first moments on earth.
  • Your donation of $50 will more than cover one mailing at non-profit bulk rate of our Newsletter.
  • Your donation of $100 will provide a Hospital or Medical Center with our printed materials to share with families.
  • Your donation of $150 will help us provide 1000 awareness ribbons for friends, families, the medical community and the general public. Breath of Hope has always provided these free of charge to everyone.
  • A donation of $25,000 will go towards our future Scholarship Fund for these children to have a college degree and future health professionals to one day work with families.

You can also request your donation go for Congenital Diaphragmatic Hernia Medical Research and we will be sure that it goes into that fund we forward to those doing Medical Research!

So quit scratching your head on what you are going to get that person you just can't figure out what to get - donate in their name - you will feel good - and so will they!

Wednesday, December 17, 2008

Congenital Diaphragmatic Hernia Awareness in New Jersey - March 31, 2009

Chad's Uncle Daniel sent us a photo of the City of Runnemede Official Proclaimation (NJ) - THANK YOU Daniel!

Monday, December 15, 2008

Breath of Hope Scholarships for 2009

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 $2,000 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.

For the Miracle Scholarship and the Hope Scholarship we must have a signed letter attesting that you are either a congenital diaphragmatic hernia survivor or a family member of someone who had/has the congenital diaphragmatic hernia birth defect.

Requirements for all scholarships are a minimum of a 2.0 GPA and write a 500 word essay on your chosen career path and goals. Scholarships are awarded to those who are well rounded students who have been involved with community and philanthropy. Breath of Hope, Inc. may publish all or part of your essays and your name and the college you will attend utilizing this scholarship.

Scholarship Applications are being accepted now and will be reviewed in April 2009 to be awarded by April 30, 2009 for the 2010 academic school year. Complete packets must be received by Breath of Hope by March 31 in order to be reviewed and awarded on this timeline.

To receive the applications please contact boh@breathofhopeinc.com in the Subject please enter "Scholarships"

Sunday, December 14, 2008

Worldwide Children's Memorial Day


We wanted to Promote the World Wide Candle Lighting on December 14, 2008 - Compassionate Friends started this amazing event - always the second Sunday in December. Please light a candle at 7 PM your time and extinguish it at 8 PM so our angels will see the ring of light around the world.
http://www.compassionatefriends.org/News_Events/Worldwide_Candle_Lighting.aspx

Saturday, December 13, 2008

BREATH OF HOPE MAKES A DIFFERENCE!


Dear Mrs. Doyle-Propst and Breath of Hope Day of Caring Volunteers,

On behalf of the patients of the University of Virginia Children's Hospital, please accept our most sincere thanks for you donation of the handcrafted memory kits of the Newborn Intensive Care Unit for our littlest patent's first hand print. I cannot tell you how special your gifts are to the families who receive these lovely treasures!

We realize that much time has gone by and I am extremely sorry for my long delay in sending our acknowledgments. Please know that we have not forgotten your kind hearts!

Your group has created such a special and unique keepsake and this is an exceptional gift for our patients' families to receive. We are truly grateful for all the time and effort that you have put in to help our babies and their families.

As always, your contributions help families get through the most stressful and difficult periods of their lives. Your hand print kits create a special way for families to honor and treasure their children.

Please share with all those who have been involved in this effort how much the staff and families value everyone's generosity and thoughtfulness. We greatly appreciate your involvement and aid. We are grateful for your compassion and community spirit ins supporting the families and their children at the University of Virginia's Children's Hospital!

Sincerely,

Kimberly A. Garofalo
Volunteer Coordinator
UVA Children's Hospital

Sunday, December 7, 2008

Quote - Appropriate for Congenital Diaphragmatic Hernia Families

What oxygen is to the lungs, such is hope to the meaning of life. ~ Emil Brunner

Monday, December 1, 2008

If You Care...

Many of the families who have survivors of CDH may be denied by their insurance companies a RSV shots which as this sample letter states is a preventative measure to keep not just CDH babies but many children who started in a NICU or have survived through some form of critical care.

Please feel free to use this text for your own letters. All States regulate our Insurance Industry - send this letter to your State Representative and perhaps they will take this under advisement!

Thank you!
________________________

Your Name/Address



Date



Your State Representative’s Name and Address

(This should be available on your State Website)



Dear Honorable (Insert Name):

States regulate the Insurance Companies who insure constituents in our area. This regulation protects the consumers and insured. I/we are writing you because there is a injectable shot for Synagis (RSV) which is recommended for infants born prematurely, with heart and lung issues. Synagis is a common virus and it most of us a simple common cold but for these infants and children it can send them back to the hospital and could be deadly. It is also recommended by the American Academy of Pediatrics for children with chronic lung disease up to age two.

These shots are given monthly at a cost of up to or more than $10,000 for the season from late October through April. Just like the flu shot, these are not guaranteed to protect the child from RSV but lessen the duration. Many families have their insurance companies deny coverage for these shots and must appeal after obtaining letters and recommendations from their children’s doctors and specialists. Parents are not subjecting their young children to monthly shots because they want to, but because they feel it is necessary in order to protect them from further setbacks in their development and possible death.

A hospitalization of a child with RSV can run into the tens of thousands and could very well cause further respiratory and developmental issues that would cost more to said insurance companies.

We would like for our state to pass some form of regulation on the Insurance Industry here in (State Name) which would either meet or exceed the American Academy Pediatrics Recommendation for such immunizations on these children.

(Our son/daughter – or any relationship – or your experience here about children that need this preventative care.)

Thank you for your time and attention to this matter. I would be more than happy to discuss further this very important matter.

With kind regards,
Your Name

Sunday, November 30, 2008

What is Beyond Your Hopes?

If you do not hope, you will not find what is beyond your hopes.
St. Clement of Alexandra

Friday, November 28, 2008

How To Help - Listen...Help for the Caretaker

The most basic and powerful way to connect to another person is to listen. Just listen. Perhaps the most important thing we ever give each other is our attention... A loving silence often has far more power to heal and to connect than the most well-intentioned words. --Rachel Naomi Remen

______

Our families have told us people react to their situations of having a baby with congenital diaphragmatic hernia so differently. I often tell them that strangers become the best of friends and some family and friends become just strange. Sometimes people don't know what to say, how to help or say something unintentionally that isn't appropriate.

How can you help a family that is going through this - either just diagnosed in utero, in the NICU, who just became an angel or who is bringing home one of these special children?

(These are just a few - I am sure you all are creative and innovative enough to think of thousands of things to help.)
  • Listen to them - really hear what they are saying and you might find out what they need, Sometimes it is just a hug, perhaps a meal prepared for their family or doing a chore for them that might allow them time.
  • If they have other children, take the children to a playground, mall or something to do away from their family just to do something without the tension that is in their home. This is so valuable.
  • Send them a card, e-card - just state you care and are thinking or praying for them.
  • Help them send out birth announcements, run to the store for them and grocery shop or any other task that takes time or energy - offer to assist them!
  • Don't say you understand - until you have walked in their shoes - no one truly understands. I personally like, "I don't understand but I will try and I am here if you need me."
  • Remember their whole family is going through hell. There is no other word for it - when you are faced with these issues - it is hell on earth. We try to give HOPE and faith that they will survive this and thrive! They do - all say they will never be the same again and they learned more from these babies than a lifetime of learning!
  • Support any and all decisions they make for the care of their unborn, newly born, their new angel or baby at home. They know better than anyone how to take care of their child and their instincts are vitally important - and 99% of the time are absolutely the best for their child and their family.
  • Even one little thing to help - goes a LONG way - don't ever think it does not. Say a prayer or think of them - there is power in positive thinking and prayer.

Tuesday, November 25, 2008

TODAY 5 BABIES WILL BE DIAGNOISED

This was originally researched, written and published in October 2007:

TODAY 5 BABIES WILL BE DIAGNOSED

Today almost 5 families in the United States alone will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.Thirty-five (35) families a week.

One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies.

The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.

What can you do to help save these babies? What will help these families? What can you do to make a difference?
1. Learn about congenital diaphragmatic hernias.
2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need.
3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2009 for Congenital Diaphragmatic Hernia Awareness Day!

When someone asks what it's for – tell them!

written entirely by Elizabeth Doyle-Propst 10/24/2007

Monday, November 24, 2008

The Promise of New Treatments to help Babies Still in the Womb

http://citizeneconomists.com/view_articles_detail.php?aid=145

This article was just published today, it states the following:

Spina bifida affects 1 in every 1,500 babies each year while CDH occurs in 1 of every 2,500. In the U.S., $230 million each year is spent due to CDH4. According to the Centers for Disease Control (CDC), $636,000 is spent for each baby born with spina bifida during their lifetime5. This is only a small fraction of the costs associated with the various diseases children can be born with. If the possibilities for stem and gene therapy come to fruition as many scientists believe they will, these costs can be reduced for both the families affected as well as the government.

Saturday, November 22, 2008

Statistics of CDH from Accurate Sources...

Today, almost 5 families will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.

Thirty-five (35) families a week. One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.


Our world population as of 11/23/2008 is 6,738,684,582 taken from: http://www.census.gov/ipc/www/popclockworld.html


The birth rate can be as high as 30/1000 to 15/1000 and the birth rate has fallen in the United States over this last year. World estimated birth rate is 19.97 for every 1000 people and this figure was taken from: http://www.indexmundi.com/world/birth_rate.html


Now, if there are 19/1000 - for this year that would equal to: 6,738,684 births estimated in the world.

Congenital Diaphragmatic Hernia has a rate of 1/2000 pregnancies and perhaps 1/2500 births due to miscarriage and heartbreaking interrupted pregnancies. World birth rate for CDH would be 2,695.47.

Now if you take the World Population to see how many people have been affected by CDH - this would be estimated at 1,347,736 people - this is at a rate of 1 in every 5000. They could be family, friends of family or the actual baby affected. We have been contacted by people who just discovered by reading our information that they were born with CDH or the baby they had in the 1960s died of CDH. They have been told hernia that affected the lungs and then gradually put it together reading our information.


So this means that there are over a million out there in this world that have been affected by Congenital Diaphragmatic Hernia. Where are you? We need your help to bring this birth defect to the forefront in medical research and awareness. We need national Awareness Days in each country. We need newly expecting parents to have heard of this birth defect before they have their ultrasound. We need more people educated on a birth defect that still has overall a 50% survival rate. We better care for the children affected so they can continue to be the pioneers who help health professionals not just maintain their health but it improve so they can go forward and make more aware.

Awareness brings Medical Research which in turn increases the survival rates. Prime example of this is Breast Cancer Awareness - from this early detection has increased survival rates. The same will happen for congenital diaphragmatic hernia.

Tuesday, November 18, 2008

Our Finest Moments Occur...

"The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers." - Unknown

Sunday, November 16, 2008

I'm Aware ~ Are You?

On Zazzle is a new shirt design by Breath of Hope:

I'm Aware ~ Are You? - this design can go on any shirt. On the front left pocket is the turquoise Awareness Ribbon with I'm Aware ~ Are You? - on the back of this shirt is part of this statement which started off Today 5 Babies will be diagnosed...

Our theory is that many people wait in lines and would read the back of the shirt while waiting and become aware of congenital diaphragmatic hernia.

There are also several other new items available on our Zazzle Store which has a link at the bottom of this blog.

Please be sure to Goodsearch and Goodshop to Zazzle and a percentage of the sale will go to our Goodsearch for Research program - 100% of all funds raised through Goodsearch will go to Congenital Diaphragmatic Hernia Medical Research.

Sunday, November 9, 2008

2009 Faces of CDH Calendar - CDH Awareness from Zazzle.com

2009 Faces of CDH Calendar - CDH Awareness from Zazzle.com

Our 2009 Faces of CDH Calendar is available at Zazzle. More options - sizes of calendars and Zazzle offers discounts on orders of more than 1 item. These make an amazing Christmas Gift!

Saturday, November 8, 2008

Text of S. 1810: Prenatally and Postnatally Diagnosed Conditions Awareness Act

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810


One Hundred Tenth Congress
of the
United States of America
AT THE
HOUSE OF REPRESENTATIVES
September 24, 2008Referred to the Committee
SECOND SESSION
Begun and held at the City of Washington on
Energy and Commerce
AN ACT
Thursday, the third day of January, two thousand and eight
An Act
To amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘Prenatally and Postnatally Diagnosed Conditions Awareness Act’.
SEC. 2. PURPOSES.
It is the purpose of this Act to--
(1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;
(2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and
(3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.
Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following:

‘SEC. 399R. SUPPORT FOR PATIENTS RECEIVING A POSITIVE DIAGNOSIS OF DOWN SYNDROME OR OTHER PRENATALLY OR POSTNATALLY DIAGNOSED CONDITIONS.
(a) Definitions- In this section:
(1) DOWN SYNDROME- The term ‘Down syndrome’ refers to a chromosomal disorder caused by an error in cell division that results in the presence of an extra whole or partial copy of chromosome 21.
(2) HEALTH CARE PROVIDER- The term ‘health care provider’ means any person or entity required by State or Federal law or regulation to be licensed, registered, or certified to provide health care services, and who is so licensed, registered, or certified.
(3) POSTNATALLY DIAGNOSED CONDITION- The term ‘postnatally diagnosed condition’ means any health condition identified during the 12-month period beginning at birth.
(4) PRENATALLY DIAGNOSED CONDITION- The term ‘prenatally diagnosed condition’ means any fetal health condition identified by prenatal genetic testing or prenatal screening procedures.
(5) PRENATAL TEST- The term ‘prenatal test’ means diagnostic or screening tests offered to pregnant women seeking routine prenatal care that are administered on a required or recommended basis by a health care provider based on medical history, family background, ethnic background, previous test results, or other risk factors.
(b) Information and Support Services-
(1) IN GENERAL- The Secretary, acting through the Director of the National Institutes of Health, the Director of the Centers for Disease Control and Prevention, or the Administrator of the Health Resources and Services Administration, may authorize and oversee certain activities, including the awarding of grants, contracts or cooperative agreements to eligible entities, to--
(A) collect, synthesize, and disseminate current evidence-based information relating to Down syndrome or other prenatally or postnatally diagnosed conditions; and
(B) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for Down syndrome or other prenatally or postnatally diagnosed conditions, including--
(i) the establishment of a resource telephone hotline accessible to patients receiving a positive test result or to the parents of newly diagnosed infants with Down syndrome and other diagnosed conditions;
(ii) the expansion and further development of the National Dissemination Center for Children with Disabilities, so that such Center can more effectively conduct outreach to new and expecting parents and provide them with up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;
(iii) the expansion and further development of national and local peer-support programs, so that such programs can more effectively serve women who receive a positive diagnosis for Down syndrome or other prenatal conditions or parents of infants with a postnatally diagnosed condition;
(iv) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with Down syndrome or other prenatally or postnatally diagnosed conditions, and links to adoption agencies willing to place babies with Down syndrome or other prenatally or postnatally diagnosed conditions, with families willing to adopt; and
(v) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients, consistent with the purpose described in section 2(b)(1) of the Prenatally and Postnatally Diagnosed Conditions Awareness Act.
(2) ELIGIBLE ENTITY- In this subsection, the term ‘eligible entity’ means--
(A) a State or a political subdivision of a State;
(B) a consortium of 2 or more States or political subdivisions of States;
(C) a territory;
(D) a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Service; or
(E) any other entity with appropriate expertise in prenatally and postnatally diagnosed conditions (including nationally recognized disability groups), as determined by the Secretary.
(3) DISTRIBUTION- In distributing funds under this subsection, the Secretary shall place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations.
(c) Provision of Information to Providers-
(1) IN GENERAL- A grantee under this section shall make available to health care providers of parents who receive a prenatal or postnatal diagnosis the following:
(A) Up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes.
(B) Contact information regarding support services, including information hotlines specific to Down syndrome or other prenatally or postnatally diagnosed conditions, resource centers or clearinghouses, national and local peer support groups, and other education and support programs as described in subsection (b)(2).
(2) INFORMATIONAL REQUIREMENTS- Information provided under this subsection shall be--
(A) culturally and linguistically appropriate as needed by women receiving a positive prenatal diagnosis or the family of infants receiving a postnatal diagnosis; and
(B) approved by the Secretary.
(d) Report- Not later than 2 years after the date of enactment of this section, the Government Accountability Office shall submit a report to Congress concerning the effectiveness of current healthcare and family support programs serving as resources for the families of children with disabilities.’.

Passed the Senate September 23 (legislative day, September 17), 2008.
Attest:
NANCY ERICKSON,SecretarySpeaker of the House of Representatives.
Vice President of the United States and
President of the Senate.

Thursday, October 30, 2008

Quote...

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Wednesday, October 15, 2008

Pregnancy & Infant Loss Awareness Day

Today is Pregnancy and Infant Loss Awareness Day ~ we wish to honor all babies and their families and promote Remembering Our Babies.
Tonight light a candle at 7 PM - if you extinguish it at 8 PM there will be a continuous wave of light through the time zones of the world.

Saturday, October 4, 2008

GoodSearch for Research


Breath of Hope, Inc. launched its Congenital Diaphragmatic Hernia Awareness® Campaign in July 2007. Members of Breath of Hope’s support forum, their families and the general public made March 31, 2008 the first Congenital Diaphragmatic Hernia Awareness Day™ in thirty-one states. This successful event gave those affected by CDH an arena to share their stories with their communities and speak for those who could not.

The Congenital Diaphragmatic Hernia birth defect has been affecting infants since the 18th century. Until the Congenital Diaphragmatic Hernia Awareness® campaign, no other efforts had been made to educate the general public about the severity of this birth defect. The first time many families became aware of the defect was at an ultrasound appointment.

Awareness brings funding for research and better treatment for the condition and/or birth defect. Take a look at the Breast Cancer Awareness Campaign and see how it has evolved. Because of the efforts of those affected, everyone sees a pink ribbon and thinks about breast cancer. Through their pink ribbon campaign, many companies now donate a portion of their profits to Breast Cancer Research.

The Turquoise Ribbon represents the Congenital Diaphragmatic Hernia Awareness® Campaign for Breath of Hope. It is not teal, it isn't pink or blue – it is Turquoise. The symbolism behind that color and stone clearly support these children, families and the health professionals out there who care for them. The Turquoise stone has been around for centuries. Congenital Diaphragmatic Hernia has also been around for centuries and has been found in Egyptian Mummies.

Just ten years ago the frequency in pregnancies of CDH was 1-3500 to 5000 and it was considered rare. Today, the frequency is 1-2000 to 2500 – Breath of Hope stands by the 2000 because many of those figures do not include pregnancies that resulted in stillborn, miscarriage or were heartbreakingly interrupted. We consider those babies as part of our statistics, giving a truer reflection of the entire picture.

Breath of Hope encourages research for this devastating birth defect. To assist in furthering research, Breath of Hope will fundraise and donate funds to the medical researchers who need money to continue their efforts. Any donation earmarked for research, will be forwarded to these researchers. The Board of Directors of Breath of Hope, Inc. recently approved the donation of funds to Johns Hopkins where a surgeon is painstakingly researching lung growth. The lungs are the key for these unborn, just born and growing children.

GoodSearch for CDH Research:


  • Breath of Hope has established an Endowment Fund for Medical Research of Congenital Diaphragmatic Hernia.

  • Breath of Hope pledges all Funds generated through GoodSearch for Breath of Hope will go to this Fund and then will be redirected to Medical Research.

  • Any Funds Donated to Breath of Hope earmarked for Research will also be added to this Fund.

One day we hope our awareness efforts will further government funding for research, increase in the survival rate and improve the lives of congenital diaphragmatic hernia families.

We encourage other organizations that support Congenital Diaphragmatic Hernia families and research to use the turquoise ribbon as well.

We ask you to join our mission.

To GoodSearch for Breath of Hope - see the bottom of the blog for a GoodSearch GoodShop link to take you directly to the GoodSearch Page. Or go to the page and choose Breath of Hope - Charlottesville, VA - start searching or shopping. You can also check on our progress throughout and see how much will go to funding Medical Research efforts for Congenital Diaphragmatic Hernia!

If you do Internet Shopping - GoodSearch has many retailers which will donate a percentage of your purchase (at no cost to you) to Breath of Hope and it will in turn fund Medical Research for Congenital Diaphragmatic Hernia.

Tuesday, September 30, 2008

CDH Study Group

This http://cdhsg. net/ web site is designed as a resource for the Congenital Diaphragmatic Hernia Study Group. The CDH Study Group has over 50 centers that submitting data to this database that is run by Kevin P. Lally, MD. The Wisconsin coordinator monitors the NICU census daily.

Sunday, September 28, 2008

Johns Hopkins - Link & Medical Research Funded

I had to share this link that Johns Hopkins has for congenital diaphragmatic hernia:

http://www.hopkinschildrens.org/tpl_rlinks_nav1up.aspx?id=3518

Breath of Hope, Incorporated also has donated funds to Johns Hopkins for Medical Research related to CDH. We will continue to donate funds for medical research out there so that one day through awareness and research answers and treatments will be found.

Thursday, September 25, 2008

Courage - the Foundation of Integrity

With courage you will dare to take risks, have the strength to be compassionate, and the wisdom to be humble. Courage is the foundation of integrity. --Keshavan Nair

Tuesday, September 23, 2008

Timely Quote....

Empty pockets never held anyone back. Only empty heads and empty hearts can do that.
--Norman Vincent Peale

Sunday, September 21, 2008

Handprint Kits from the United Way Day of Caring


With eight volunteers we assembled 500 of the pictured kits with Paris of Plaster and the Instructions inside. These will be a treasured memento for families whose children are admitted to the University of Virginia Children's Medical Center NICU and for those Breath of Hope Expectant Parents too.
The University of Virginia Health Service Supply Chain Management Staff is amazing! Thank you all!

Saturday, September 20, 2008

Breath of Hope


Life is fragile, but hope is strong.

All good things begin with hope.




Saturday, September 13, 2008

Breath of Hope and the United Way Day of Caring

This is the 17th Annual United Way Laurence E. Richardson Day of Caring in Charlottesville, Virginia. It is an opportunity for local charities to receive volunteers to help with many things that may not get done due to limited manpower. Local businesses have their employees volunteer to help with anything from office work to landscaping.

Breath of Hope has signed up to receive volunteers on Wednesday, September 17, 2008 who will be assembling Infant Hand Print Kits which will go to the University of Virginia Children's Medical Center NICU. Families who have a baby at UVA's NICU will receive a hand print kit to keep as a treasured memory of their little one's first days on earth. UVA has approximately 450 infants admitted to their NICU each year we will be assembling 500. Of those kits, 50 will be used for Breath of Hope's Expectant Parent Care Package which has always included a hand print kit for these special babies.

Added to this - 17 others will learn of the congenital diaphragmatic hernia birth defect and may spread the word to many others too.

Thursday, September 4, 2008

Aware - Awareness - Cognizant

Let us not look back in anger, nor forward in fear, but around in awareness. --James Thurber


a·ware
play_w2("A0551800") (-wâr) adj.
1. Having knowledge or cognizance: aware of the difference between the two versions; became aware of faint sound.
2. Archaic Vigilant; watchful.

[Middle English, variant of iwar, from Old English gewær; see wer-3 in Indo-European roots.]

a·wareness n.
Synonyms: aware, cognizant, conscious, sensible, awake, alert, watchful, vigilantThese adjectives mean mindful or heedful: Aware implies knowledge gained through one's own perceptions or by means of information:
Are you aware of your opponent's hostility?
I am aware that the legislation passed.

Cognizant is a formal equivalent of aware: "Our research indicates that the nation's youth are cognizant of the law" Jerry D. Jennings.Conscious emphasizes the recognition of something sensed or felt: "an importance . . . of which even Americans are barely conscious" William Stanley Jevons.

Sensible implies knowledge gained through intuition or intellectual perception: "I am sensible that the mention of such a circumstance may appear trifling" Henry Hallam.

To be awake is to have full consciousness of something: "as much awake to the novelty of attention in that quarter as Elizabeth herself" Jane Austen.Alert stresses quickness to recognize and respond: I remained alert to career opportunities.Watchful and vigilant imply looking out for what is dangerous or potentially so: The watchful parents protected their toddler. The ranger kept a vigilant eye out for forest fires.

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2003. Published by Houghton Mifflin Company. All rights reserved.

Sunday, August 31, 2008

Hopeful Parents Anxiously Await Birth of Baby with Birth Defect - Congenital Diaphragmatic Hernia

An amazing Mom, Tiffany, who is expecting a CDH baby in November contacted her local paper and they ran a wonderful article today which appeared on the front page. Now that is spreading awareness!

The Quincy Herald Whig article by Kelly Wilson

http://www.whig.com/story/news/congenital-disorder---SUN

Absolutely wonderful article - Kelly Wilson did an awesome job!

Tuesday, August 26, 2008

A Quote to Live By...

Never give in... never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force... never yield to the apparently overwhelming might of the enemy. ~Winston Churchill

Sunday, August 3, 2008

Congenital Diaphragmatic Hernia Awareness Car Magnet Available


Extremely high quality - and the image is better and clearer than above. It took us several months to choose a vendor and these are perfect! They are rectangle 3 inches by 8 inches. These magnets don't take up much space but are a powerful impact!
As soon as we have a good picture of a one we will add it to the blog and website!
They are $2 each plus shipping! The buy Button is to the right of this page!

What Donations Do - Actions Speak Louder Than Words...


© Every Breath They Take Is Our Breath of Hope
The vision must be followed by the venture. It is not enough to stare up the steps -- we must step up the stairs. --Vance Havner




Many non-profit organizations will ask for donations. It is what sustains their existence. Few will tell you exactly what your donation does.




A donation of $10 will provide a grieving family with information to help them through this tragic life-changing event.




A donation of $15 will provide an expectant family with a blanket to wrap their CDH baby in as well as a hand print to keep as a memento of their child's first moments on earth.




A donation of $50 will more than cover one mailing at non-profit bulk rate of our Newsletter.




A donation of $100 will provide a Hospital or Medical Center with our printed materials to share with families.




A donation of $150 will help us provide 1,000 Awareness Ribbons for friends, families and the medical community. Breath of Hope provides these free of charge to everyone.




A donation of $25,000 will go towards our Scholarship Fund for these children to have a college degree, future health professionals to be and any one in the general public that wishes to further their education.




At Breath of Hope....

  • We don't use an ad agency
  • We don't use a Public Relations Firm
  • We don't use a Marketing Firm
  • We don't pay Executive or Professional Salaries
  • We do our mailings in-house
  • We don't rent mailing lists
  • We mail at maximum discounted bulk non-profit rates
  • We do our graphics in-house
  • We are Tax-Exempt in the Commonwealth of Virginia and purchase office supplies without paying sales tax
  • To maximize our expenses, we purchase office supplies using coupons, sales and reward certificates and utilize Good Search to get a percent back at the end of the year.
  • Prizes are sponsored
  • We virtually have no overhead
  • Our Accounting is done in-house
  • Most work is done by talented volunteers

Congenital Diaphragmatic Hernia AwarenessTM started with Breath of Hope's campaign to have each and every state in the US to Proclaim March 31 as Congenital Diaphragmatic Hernia Awareness® Day. This year we had 31 States. Governors and local officials all over the United States became aware of CDH. Senator Clinton became aware of CDH. In nine months we accomplished something no other had done before. We will continue to work towards a Perpetual Day that will recognize March 31 as a day to pause, reflect and learn of this birth defect that every week 5 families hear about for the first time. We want to change that fact.


Breath of Hope, Incorporated© 2008

Saturday, July 26, 2008

In Rememberance - The Last Lecture - Lives on in All of Us


We can't change the cards we're dealt, just how to play the hand. --Randy Pausch


________________

From the Wall Street Journal
In his final months, while millions of people world-wide were watching his inspirational last lecture, Randy Pausch was cocooned at home in Virginia with his wife and three young children. "Every time I'm with the kids now, there's this total sense of urgency that I try not to let them pick up on," he told me. "I can't say things and reinforce them in four years. My time is now." The computer-science professor from Carnegie Mellon University, honored as one of Time magazine's 100 most influential people in the world, died at home Friday morning at age 47 of pancreatic cancer. MORE

____________________________________________________________________
There is also a very touching video on that page. I received an email last fall when the Last Lecture was given at Carnegie Mellon University. I had meant to buy his book over the last months only it got away from me. Ironically I made the purchase on Thursday, July 24 - and he is now among the angels as of Friday.
I wish his family and friends peace in this trying time but know that he ignited the world with his words - never intending to. I guess his dreams just happened. Karma just came.

Tuesday, July 22, 2008

PRESS RELEASE / ANNOUNCEMENT - BREATH OF HOPE RECEIVES GRANT FROM GMAC FINANCIAL

We are pleased to announce that Breath of Hope, Inc. has received a grant from GMAC Financial. This grant is for an Endowment Fund to award scholarships to people attending colleges and universities with an interest in raising awareness, developing treatment options, increasing the survival rates, and giving our children born with a congenital diaphragmatic hernia ("CDH") a better quality of life. Scholarships will also be available for survivors of CDH.

Breath of Hope wants to give back to those who further our cause. We want to help them with their education so they will be able to lessen the residual affects that plague families affected by CDH.

Thanks to the generosity of the public, Breath of Hope has generated enough funding to cover our operational expenses for this year. Breath of Hope keeps it's operating expenses to a minimum and by doing so, we have maintained enough funding to set aside and start this fund.
This generous grant from GMAC Financial will further the education of those children born with CDH, as well as people who are interested in increasing awareness, treatment and knowledge of the congenital diaphragmatic hernia birth defect.

Breath of Hope is currently creating a Scholarship Committee that will review the applications and help contact colleges and universities to get the word out that there will be awarded scholarships for the 2009-2010 year.

If you have knowledge of any available grant programs which you would like Breath of Hope to apply for, or if you would like to contribute to this scholarship fund, please contact Elizabeth Doyle-Propst at Elizabeth@breathofhopeinc.com or 888-BOH-CDH0 (888-264-2340).

Tuesday, July 15, 2008

Leadership is...

Leaders are more powerful role models when they learn than when they teach. --Rosabeth Moss Kantor

Sunday, July 13, 2008

Caring, Spreading Awareness and Capturing Memories


On Wednesday, September 17 - Breath of Hope will have a project with the Thomas Jefferson Area United Way for the Day of Caring. We will assemble 500 baby hand print kits. Fifty of the kits will be used for our Expectant Parent Packages we send families of Breath of Hope along with a few other items which help these families prepare for their CDH baby.
The University of Virginia Children's Medical Center NICU has approximately 450 infants admitted each year. The remaining and bulk of these kits will be delivered to the University of Virginia's NICU so each family that has a baby admitted will have this special memento of their child's first moments.
A Community Grant will help fund the materials needed for these hand print kits and once that is finalized we will formally thank the corporation.
Each family will also know that Breath of Hope and the United Way Day of Caring made these hand prints possible. This will also spread a bit of Awareness!

Friday, July 11, 2008

Inspired by Some Great Purpose

When you are inspired by some great purpose, some extraordinary project, all your thoughts break their bounds. Dormant forces, faculties and talents become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be. --Pantanjali
Very inspirational video at this link:

Thursday, June 26, 2008

Breath of Hope is Now A Carepages Affiliate


Breath of Hope, Inc. Helps Patients, Families and Friends Stay Connected with New CarePages.com Services

CarePages.com facilitates communications and emotional support that studies show contribute to better patient experiences and outcomes


Charlottesville, Virginia -- Breath of Hope, Inc. now offers patients, their families and friends free access to CarePages.com, healthcare’s largest social network to provide the emotional support needed for healing and well-being.

CarePages.com enables those involved in a health event to create private, Web sites for sharing health updates, photos and supportive messages. CarePages.com also has resources to help people cope with the emotional challenges of a health event, including inspiring stories, tools to meet others in similar situations, and practical tips and advice on “what to do” and “what to say” during difficult and stressful situations.

With this new service, Breath of Hope, Inc. is in the forefront of a growing trend among public charities that support families and friends to improve the overall patient experience by recognizing and meeting their emotional needs. A recent survey of nearly 900 caregivers and visitors to patient CarePages found that more than 92% said they would like to see healthcare providers be more proactive in providing emotional support.

In addition, several clinical studies have concluded that emotional support can have a positive effect on the healing process. For example, an article in the Joint Commission Journal on Quality and Safety (December 2003), reported that emotional well-being has been shown to be predictive of survival and functional independence among older patients.

“CarePages helps Breath of Hope, Inc. move forward on one of our key priorities—increasing patient well-being and overall patient and family satisfaction,” said Elizabeth Doyle-Propst, CEO “It’s very easy to use, since we’ve integrated CarePages.com with our own Web site http://www.breathofhopeinc.com/ and other services.”

“Breath of Hope, Inc. recognizes that communication and personal interactions can transform health events into more positive experiences for all participants,” said Eric Langshur, CEO, CarePages, Inc. “CarePages has helped millions of patients connect on a deeper level with their families, friends and other caregivers, and we are proud to welcome Breath of Hope, Inc. into the CarePages community.”

In addition to giving patients and families emotional support, CarePages.com makes it easy for patients and families to recognize Breath of Hope, Inc members who have provided superior levels of care. The service also gives them the opportunity to support Breath of Hope, Inc.

CarePages.com is secure and compliant with all HIPAA requirements. It ensures that patients, families and healthcare providers are protected online through strict privacy policies, password-protection and visitor management tools for CarePage Managers.

# # #

About CarePages, Inc.

CarePages.com is the first site dedicated solely to helping people cope with the emotional difficulties caused by a health event. Millions of CarePages.com members have used its free, patient-centric Web pages to communicate and connect with each other, plus its unique resources to guide them through the experience. In addition, customized CarePages are offered by nearly 700 U.S. and Canadian healthcare facilities. CarePages, Inc. is part of Revolution Health Group LLC, whose goal is to help consumers make informed choices and put them in control of their health decisions through the cornerstone of its efforts – RevolutionHealth.com. Together, these services address both the emotional and informational health care needs of its members. For more information, please visit http://www.carepages.com/.

Monday, June 16, 2008

Congenital Diaphragmatic Hernia Rare? Or Not?

I was astounded earlier this month when I was watching our local CMC Telethon to raise funds for the local Children's Medical Center. I wasn't in awe of the funds raised - something hit me hard. They featured a baby who was still in the NICU there but on his way home and he was recovering from a congenital diaphragmatic hernia. Now that wasn't what hit me. I know that there are at least 20 in the city I live who have had children with CDH. I know that we have members of the Breath of Hope Yahoo Group that live in the same town, some within driving distance of one another for a "normal commute".

What struck me was they referred to the congenital diaphragmatic hernia birth defect as "rare". Rare? I don't think so.

In March 2007, Stacy and I researched the statistics out there and we wrote the following which is copyrighted material:

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 – 3,000 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 1800 live births of the congenital diaphragmatic hernia birth defect per year. Cystic fibrosis, which occurs in 1 in 3,000 live births in the United States and spina bifida, which has an occurrence of 7 in 10,000 or 1 in 1478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida although congenital diaphragmatic hernia occurs just as often, with fatal results.
[© 2007-2008]

In 1999, when I was pregnant with my daughter the statistics for CDH stated it occurs 1 - 3,500 - 5,000. Has the occurrence increased? The birth rate really hasn't but the occurrence of CDH in pregnancies appears to have increased. Yet, we have broadcasts (granted the media) stating that congenital diaphragmatic hernia is "rare".

The survival rates of infants born with congenital diaphragmatic hernia is still generally the same too - 50% - and this is what may make it rare - that there are half the children who have had this birth defect each year surviving and growing up into our society. This is what makes it rare - the survival rates!

In almost ten years - the survival rates even with the gentle vent technique and various drugs that are now approved to use for these infants to overcome Pulmonary Hypertension. This must change. There is research looking at genes of the parents, child and siblings. There needs to be more research in developing treatments so that more and more of these children survive. Further this more research to develop plans to help these children who might have reflux, failure to thrive, eating issues, scoliosis and chronic lung issues.

It is not a rare birth defect. It is a rarely survived birth defect - based solely upon the numbers of approximately 900 each year.

Sunday, May 25, 2008

Thoracoscopic Congenital Diaphragmatic Hernia Repair in an Infant

I came across this link from a CDH Mom's blog - on this link is a video of a Thoracopic Congenital Diaphragmatic Hernia Repair - it is just the view from the camera as surgery is done. It is amazing. Most CDH Repairs are done with traditional surgery. Those that are not as large can be done as this one.

http://surgery.med.umich.edu/pediatric/clinical/physician_content/a-m/congenital_diaphragmatic.shtml

Sunday, May 18, 2008

New Blog - Faces of CDH Awareness

This blog will feature a child and family affected by CDH and also collect links to their websites, blogs and Carepages - so that others can easily find those who have been affected by the birth defect Congenital Diaphragmatic Hernia.

We are adding to it and soon will feature a child on a regular basis. We also hope this gives hope to those expecting a CDH baby and their families and friends and also to those amazing health professinals out there on the front lines!

Enjoy!

http://facesofcdhawareness.blogspot.com/

SHOW ME YOUR TURQUOISE WINNERS!












Long overdue - we apologize but here are the winners of the "Show Me Your Turquoise" contest:

From the Top - Sophia and her Turquoise Ribbon - her family and friends did a wonderful Job Raising Awareness and wearing Turquoise!
Emerson - Ah that face - and Wear Turquoise for Me T-shirt - how could you not with that face!
From the Great White North - Canada - Melissa and her boys in Turquoise and taking Turquoise Balloons for Nimkee ;-)...
And Jack showing REAL MEN do wear Turquoise - I dare anyone to tell this tough little guy they don't!
These were not in any order - we had four entries and four Gift Certificates to give - the results are all were winners. I am so glad - I couldn't decide!

Friday, May 16, 2008

Most Powerful Advocate

"There is no more powerful advocate than a parent armed with information and options."
-- Rod Paige, Secretary of Education
Thank you Carrie for sharing this quote!

Monday, April 14, 2008

Promoting Earth Day Awareness


Everyone is now using totes for their groceries! No more plastic at Whole Foods here in the US! Plus the great thing about these totes - you get more groceries and they don't bust open like plastic and even paper do!


So if you are looking for a new Tote to add to your collection - please consider this one - Breath of Hope supporting Earth Day! Both great causes!
Very heavy canvas tote with a very cool ORIGINAL Earth Day Graphic!

Monday, April 7, 2008

The Turquoise Project Contest - Update

Okay - we got a little overwhelmed with Congenital Diaphragmatic Hernia Awareness TM Day and behind - but that is to every one's advantage.

We have a Flicker Group - The Turquoise Project - we will invite all who submit photos/links to their videos - or if you want to submit others into the contest - with their okay of course - please do!

There will be four $25 Gift Cards given as prizes. Breath of Hope, Inc. Directors and Officers are exempt and can not participate. That really wonderful video of Ava's Awareness Walk is not the competition!

So email cdhawareness@yahoo.com and we will send you an invite to the Flicker Group and we can see all in their Turquoise!

The deadline for entries has been extended to April 30 - and will be awarded in early May!

Thank you all - I saw so much Turquoise - it was amazing!

Monday, March 31, 2008

Ava's Awareness Walk - Congenital Diaphragmatic Awareness Walk

There was a slight mix up - the walk was Saturday - but it made the paper! Spreading Awareness of the Congenital Diaphragmatic Hernia Birth Defect is always a good thing!

http://www.thehawkeye.com/Story/Ava-walk-033008

TODAY IS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY


We ask that you tell someone about congenital diaphragmatic hernia - send them our link here or to our website http://www.breathofhopeinc.com/ share some of the stories you know, the blogs or Carepages.


Congenital Diaphragmatic Hernia occurs 1 in 2,000 births in the United States and Hospitals and Medical Centers around the US have commented that it appears that it has increased. Each person who knows about this birth defect will be educated. More awareness will mean more education. More awareness and education will bring more funding for research. More research brings perhaps better treatments and possibly finding the cause or perhaps what might be a cause.


Thirty US States have proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day - dozens of Cities and Towns and the Country of Mexico. This is a awesome start - and we will just as these CDH children and families will not be counted out - we will continue until the Turquoise Ribbon is as common as the Pink Ribbon - which is also a wonderful cause!


If you want to do something simple - light a candle at 7 PM your time and extinguish it at 8 PM. In honor and celebration of the children that survive this devastating birth defect, in honor of the families affected by it and in memory of the children who decided wings would be more fun then feet. (They are our heroes!)


Peace.

Saturday, March 29, 2008

Children & Teens Spreading Congenital Diaphragmatic Hernia Awareness!



Betsy shared this with me - children and teens of her Sunday School class are wearing Turquoise for her Amazing son who is fighting his way through CDH. Ned, keep up the fight and we know God is with you!
We LOVE it!

Johns Hopkins Supporting Congenital Diaphragmatic Hernia Awareness


Johns Hopkins ECMO Bulletin Board
with our Congenital Diaphragmatic Hernia Awareness TM Day Poster in the center
and also an image of the Maryland Proclamation below it!
And above both - Jack and his opinion of CDH and ECMO!
Thank you Vicki - and Gary!

Wednesday, March 26, 2008

A Day For Turquoise on Monday, March 31





Article in the Gasconade County Republican Newspaper about our dear Jean and her family written extremely well by Dave Marner.



Dave - if you read this - this article gave me good tears! Thank you!




Monday, March 24, 2008

THE TURQUOISE PROJECT

Breath of Hope, Inc is launching a contest open to all - we will award a $25 gift card to four winners!

Take a picture of your Turquoise - how you wear it display it or incorporate the color - email cdhawarenss@yahoo.com - you will be invited to the Flickr Turquoise Project Group to share you photos.

Four photos will be chosen as winners - but we are all winners for promoting Congenital Diaphragmatic Hernia AwarenessTM!

We will accept photos until after Congenital Diaphragmatic Hernia Awareness Day - March 31, 2008 - the cut off for this date will be April 10, 2008.

The Breath of Hope, Inc. Board of Directors will then vote on the photos and award the winners their gift cards - perfect time - Tax Time - we could all use a gift card after tax time!

Saturday, March 15, 2008

Congenital Diaphragmatic Hernia Awareness Day - PROCLAMATION - UPDATE

The following States have proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia Awareness TM Day! (Some have proclaimed the WHOLE MONTH of March too!)
THIS IS 28 States out of 50 - over half - two are pending!

Alabama - whole MONTH of March
Alaska
Connecticut
Georgia
Illinois
Indiana
Iowa - whole MONTH of March
Kansas - whole MONTH of March
Kentucky
Louisiana
Maine
Maryland – the WHOLE MONTH too!
Massachusetts
Michigan
Mississippi
Missouri
Nebraska
New Hampshire
New Jersey - pending
Nevada
Oklahoma
Ohio
Oregon - pending
Pennsylvania
Rhode Island
South Carolina
Tennessee
Texas
Wisconsin

Cities that Have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day!

City of Charlotte, North Carolina has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness Day TM! YEAH! Way to go Holly!

Schaumburg, IL as Proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness DayTM! Way to go Theresa (and Donny too!)

Cincinnati, Ohio has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Owensville, MO - has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Gering, NE - has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Kansas City, MO - has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Columbus, OH – has Proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

Huntsville, AL – has Proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

City of Athens, TX - has proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

The County of Gasconade, Missouri - has proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

The Country of Mexico will be proclaiming March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day!

Thursday, March 6, 2008

Greg Everett

Stacy, VP and our website guru, graphic designer, writer, editor and woman who wears all hats lost her father early this week. Her father was equally as amazing as his daughter. He left Breath of Hope with a recording he did for us - an amazing voice.

http://starbulletin.com/2008/03/06/business/engle.html

Stacy - our thoughts and prayers are with you and your family.

Monday, March 3, 2008

Congenital Diaphragmatic Hernia Awareness Wristbands Now On Sale!


Turquoise Awareness Wristbands with cdhawareness.com imprinted - these are the same silicone Awareness Bracelets out on the market!
We have the following sizes:
Small/Youth Size - 7 inches
Medium/Adult Women's Size - 7.5 inches
Large/Adult Man's Size - 8 inches
Lots of 5 are $5 each - there is also shipping and handling

Saturday, March 1, 2008

MARCH IS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH


In some states - they have proclaimed the entire Month of March as Congenital Diaphragmatic Hernia TM Awareness Month!


Our count down begins - March 31, 2008 - the First Annual Congenital Diaphragmatic Hernia AwarenessTM Day!


We are offering Bloggers this image to add to their blogs!

Tuesday, February 19, 2008

Frederick News Post - Article on Congenital Diaphragmatic Hernia Awareness Day & Adorable Jack


There will be a blood drive in honor of Jack and all ECMO Patients and there is a wonderful article published today on Congenital Diaphragmatic Hernia and Awareness Day! Jack is spreading awareness and looking very handsome doing so!


Saturday, February 16, 2008

Friday, February 15, 2008

Congenital Diaphragmatic Hernia Awareness Month of March in Iowa


Governor Chet Culver, Terri Helmick, Director of Breath of Hope and Ava are pictured with Iowa’s Proclamation, Congenital Diaphragmatic Hernia Awareness Month of March 2008.

Thank you Terri for writing your letter and being an amazing Awareness Advocate! Governor Culver, thank you for recognizing this birth defect, the need for awareness in Iowa and taking time to pose for a wonderful picture. And Thank you Ava for being the beautiful miracle you are!

Sunday, February 10, 2008

I WEAR TURQUOISE FOR.....


In an effort to give choice we added a NEW shirt design to our Breath of Hope Cafepress store! I Wear Turquoise for ....
Commission earned on this merchandise is only $1 per item.
Get your Turquoise for March 31, 2008 - the FIRST EVER
Congenital Diaphragmatic Hernia Awareness TM Day!

Sunday, February 3, 2008

Making A Difference - www.keepinghopestrong.org

“One person can make a difference and every person should try.” John F. Kennedy
Keeping Hope Strong
February 9th, 2008,
PURCHASE TICKETS IN ADVANCE For $25.00
To automatically be entered into the grand prize drawing for a weekend getaway!
Tickets available at:
JB Quimby's Public House3529 Winton Rd. South, Rochester NY 585.272.9780
&
Donnelly's Public House1 Water Street Fairport, NY 377-5450
Or contact Despina Mitchell at 585-703-6088 or despina@keepinghopestrong.org
A benefit in Honor of Mason Mitchell:CDH (Congenital Diaphragmatic Hernia) / ECMO (Extra Corporeal Membrane Oxygenation) Survivor & NICU Graduate.

Please come join us - 4:00PM till...JB Quimby's Public House
3529 Winton Rd. South,
Rochester NY
585.272.9780(located in the Win-Jeff Plaza)
Live Auction(7:00pm)
Raffles(all night!)
Live Music
Eat, Drink and Be Merry!
JB Quimby's is donating a portion of food and drink sales during this event!
For more information contact Despina Mitchell at: despina@keepinghopestrong.org or 585.703.6088
A Rochester CDH (Congenital Diaphragmatic Hernia) & Golisano Children's Hospital at Strong benefit event held by Keeping Hope Strong.

Thursday, January 24, 2008

Heart of Gold Winner - Princess Projects

Terri, Ava's Mommy who was featured in the Iowa Paper Article about congenital diaphragmatic hernia, Congenital Diaphragmatic Hernia Awareness Day and is helping Breath of Hope spread awareness was sought out by Princess Projects.

Terri was awarded the Heart of Gold Award!
Princess Projects Mission:
Our Mission ~~*~Giving Challenged Girls the Attitude of a Princess~*~Our goal is to honor girls who face challenges - With a Princess Party -Complete with their own tiara
What a wonderful reward for spreading Awareness!

Wednesday, January 23, 2008

Mason is our Miracle

And yet another Newspaper Article - on the front page in Rochester, New York!
Webster Post by Tori Uthe
Despina - this is wonderful and Mason is beautiful!
Thank you Tori Uthe for reporting on this Miracle!

Tuesday, January 22, 2008

A Cause for Caden


Huntsville, Alabama Times Article by Steve Doyle




And the Cause? What else?


Congenital Diaphragmatic Hernia AwarenessTM!


Jennifer this was absolutely awesome and Steve Doyle - you wrote a fantastic article!

Sunday, January 20, 2008

Keeping Hope Strong - Update - Rochester, New York

If anyone is in this area, knows someone that may be in the area of Rochester, New York please consider going to this Event. Despina (Mason's Mommy) has worked extremely hard to make this absolutely fabulous!


Tickets are only $25 and it WILL BE a wonderful celebration of Congenital Diaphragmatic Hernia Awareness!


Please come join us - 4:00PM till...
3529 Winton Rd. South, Rochester NY
585.272.9780
(located in the Win-Jeff Plaza)
Live Auction(7:00pm)
Raffles (all night!)
Live Music
Eat, Drink and Be Merry!
For more information contact Despina Mitchell at: despina@keepinghopestrong.org or 585.703.6088
A Rochester CDH (Congenital Diaphragmatic Hernia) & Golisano Children's Hospital at Strong benefit event held by Keeping Hope Strong.

Tuesday, January 15, 2008

Mother Joins National Effort to Raise Awareness of Daughter's Birth Defect


Today, in Iowa there was an article in The Hawkye paper writen by Shawna Richtner which features one of the Breath of Hope Director's and her beautiful daughter.




Absolutely Inspiring And Spreading Awareness!


Thank you Shawna Richtner - wonderful article!


Monday, January 14, 2008

JustMeAndE

One of our amazing members who was inspired by her precious son, Elijah sent me this and I had to share.




Just beautiful Lyna!


Saturday, January 12, 2008

Keeping Hope Strong

On February 9, 2007 there will be a fund raiser in Rochester, New York that will be huge and wonderful. Despina, Mason's Mommy has done an awesome job doing this!

A Rochester CDH (Congenital Diaphragmatic Hernia) & Golisano Children's Hospital at Strong benefit event held by Keeping Hope Strong!

http://www.keepinghopestrong.org/

And the most ironic thing about this whole thing - I went to visit the Department Head at the University of Virginia's NICU yesterday and he came from Golisano Children's Hospital at Strong!

What a way to Keep Hope Strong and Promote Congenital Diaphragmatic Hernia Awarness.

Wednesday, January 9, 2008

Update on Congenital Diaphragmatic Hernia AwarenessTM Day - The States!

Alabama
Connecticut
Georgia
Illinois
Indiana
Iowa
Maine
Maryland
Michigan
Mississippi
Missouri
Nebraska
New Hampshire
Ohio
Pennsylvania
Rhode Island
Tennessee
Wisconsin

Pending - we have heard they will sign soon:

New Jersey
New York
Oregon
South Carolina
Virginia

Cities/Towns that have Proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness Day!

Charlotte, North Carolina
Schaumburg, Ill
Cincinnati, Ohio
Huntsville, AL

This is amazing - we started this in September - for those of you who sent in letters and have not heard yet - I encourage you all to contact them and see where it is in the process!

We also still need these states:

Alaska
California
Montana
New Mexico
North Dakota
Oklahoma
South Dakota
Washington
Washington DC
Wyoming