Monday, December 31, 2007
Tuesday, December 25, 2007
Sunday, December 23, 2007
And Thank You Senator Clinton and all others out there that have accepted our information, issued Proclamations and are making note that we are making a difference and changing things!
Terri, thank you and your sister and your family for letting you go out and raise Awareness - they are also key in this too!
Breath of Hope, Inc. is a public non-profit organization does not endorse candidates for any office.
Friday, December 21, 2007
Terri was able to tell her that her beautiful daughter, Ava, is a survivor of congenital diaphragmatic hernia and that Iowa has signed a Proclamation for March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day. Which Ms. Clinton, replied, "A Proclamation, that is wonderful." Terri also handed her one of Breath of Hope's AwarenessTM Day brochures.
This in itself is spreading awareness - but it can be done by anyone - everyone - from Presidential Candidate to Mayors to the person waiting in line with you doing holiday shopping - can be made aware!
Breast Cancer Awareness did not get as big as it is now - overnight - it takes small steps, one by one to get it to the level it is now!
Breath of Hope, our members, our friends and our volunteers are doing this! One step at a time.
Friday, December 14, 2007
We have had several babies born recently ~ two precious ones became angels and others are on that roller coaster ride in the NICU. We have had two babes re-herniate and one is back home and one is continuing the fight. We have a few more expecting. I saw the quote above and thought of how fitting it was to congenital diaphragmatic hernia support for families. Those of us who have already walked the walk - our hearts are with them.
At least these families know they are not alone.
Saturday, December 8, 2007
Based on the startling observation that a bee's body is too big for its wingspan to be able to carry, many people feel it's a miracle that a bee can fly at all. Some therefore think of bees as good luck, and as encouragement for getting through tough times. Bees are also a symbol of empowerment and hope in the face of great odds.
Bee pollen honey is reported by holistic healers as having special healing characteristics; bee venom is even being experimented with as a treatment for cancer. No matter what you might think about the nature of bees, their industriousness and productivity is astounding.
Monday, December 3, 2007
Sunday, December 2, 2007
Breath of Hope is seeking to change the simple fact that many people do not know about Congenital Diaphragmatic Hernia a birth defect which will be diagnosed to 5 families in the United States alone every day. Devastating statistics even more devastating to the individuals and families that this birth defect affects.
When an unborn child is diagnosed with this condition - many Moms and Dads first hear what doctors have to tell them about congenital diaphragmatic hernia - they are made aware. The second thing they do is scour the Internet for information. Much of it should be dismissed because it is about a child who was treated and became an angel more than 5 years ago - and treatment has changed. They accept that this could take their unborn child's life. Or in some cases their new born child's life.
Breath of Hope's first step is to raise awareness to all about this gruesome birth defect. Through raising awareness - there will be more research, more families that are prepared and know of this birth defect and less will have to be explained.
We now have the following states that have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day:
If interested in writing your State or City or Town, please contact us and we will send you a Sample Proclamation and a Letter you can tailor with your own information. By obtaining a Proclamation by each state and soon Country we will be spreading the word and making all aware of Congenital Diaphragmatic Hernia.
When diagnosed - these families may have heard of it and know that they are not alone and there is support.
Every Breath They Take Is Our Breath of Hope!
Monday, November 26, 2007
Update on the States that have so far issued Proclamations or have confirmed that they will. These are the States that have done so:
Virginia - pending
We just heard from a member in Oregon and she is sending them their request of the file of the Proclamation so they don't have to re-type it! YEAH!
That will be 15 of 50 - this is a fantastic start!
If interested and your state is not listed please go to the Breath of Hope website and click on the Awareness tab! Information is there and you can contact us at email@example.com and we will be happy to take your information and send you the sample letter and sample Proclamation!
Many of our members are also planning Awareness Events in their communities on March 31, 2008 - including wearing turquoise for the day - a very powerful message to send for Congenital Diaphragmatic Hernia Awareness TM....
Sunday, November 25, 2007
The above quote from the Dalai Lama reminded me of our members at Breath of Hope
When new members join - we know that they too have been affected by the birth defect Congenital Diaphragmatic Hernia and know the devastation, the joy and the struggle having a child in their lives who struggles to survive CDH. We cheer their triumphs, we worry and our tears fall with each family. It is hard watching others go through what you have gone through too. Sometimes our members need to take a break from it all - but there are always others to step forward and give encouragement. All of us with different backgrounds, some from other countries who join together with generous hearts and wholesome actions help.
And all of us together to bring Congenital Diaphragmatic Hernia Awareness TM to the world, one step at a time.
Saturday, November 24, 2007
If you are a MySpace user - and want to help support Breath of Hope www.breathofhopeinc.com and Congenital Diaphragmatic Hernia Awareness TM ~ please feel free to visit!
Wednesday, November 21, 2007
Monday, November 19, 2007
If you click on congenital diaphragmatic hernia - it links to http://www.breathofhopeinc.com/
This has made my Thanksgiving!
Sunday, November 18, 2007
To give of yourself and sacrifice for others so that their troubles are less - is more rewarding than shopping for a new electronic component or clothing. When we give, we gain and we in turn contribute to community and society to make it better.
Saturday, November 3, 2007
There is a tab that will take you to Awareness information. We have a sample letter and Sample Proclamations to send to Mayors and Governors. Please note that we have had the following states Proclaim March 31, 2008 Congenital Diaphragmatic Hernia Awareness DayTM:
Virginia - to be issued in January 2008
New Hampshire - to be issued in the coming weeks
We have also had the following cities:
Charlotte, North Carolina
Please don't think you can not help if your state or city is listed - this is going to be an ongoing grass roots effort! I am even starting in my area to coordinate events and activities to be done so more people are AWARE! Each person I speak with - is aware now! Raising awareness can be a slow process - but if we all ban together to do this - it WILL be done.
Tony - this is for you - I would be happy to send you the documents - please contact us at:
firstname.lastname@example.org or email@example.com
Every Breath They Take Is Our Breath of Hope
I liked this. Several ideas for Breath of Hope have been created - and that is the intent to push forward with our written materials, our published materials and spread Congenital Diaphragmatic Hernia AwarenessTM.
Sunday, October 28, 2007
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, 2008 for Congenital Diaphragmatic Hernia AwarenessTM Day! When someone asks what it's for – tell them!
written entirely by Elizabeth Doyle-Propst 10/24/2007
Friday, October 26, 2007
Tuesday, September 25, 2007
Tuesday, September 18, 2007
It seems like a lifetime ago - before Cecilia and before I had heard of the birth defect Congenital Diaphragmatic Hernia - I studied Anita Roddick and her business. I even wrote a speech I had to give in a Business Public Speaking Course I took in College on her. (When I went back to get my degree.) I admired this woman so much for taking a stand and trying to make a difference in this world.
A few months ago, I found her blog and had lost touch with what Ms. Roddick had been doing and learned that she was fighting illness, had sold her company and was still being the activist she always had been through her life. I want to live like that and also die like that!
Of course, my mother, my grandmother and my sister and my daughters are my heros in my life but I also can include Anita Roddick in that category also.
I recall that stock of her company fell a bit and the accountants were informing her of this "great loss". Her reply to them was something like this: "All on paper, we didn't really loose any money because we didn't have it in the first place."
If more CEOs would view it that way!
Saturday, September 15, 2007
Seize this life - no matter what it gives you - you can take the bad and turn it around. Someone recently said I am such an advocate for the CDH babies born - I hope so - not just those that go to heaven like my daughter - but those that grow and thrive in this world too.
Working for Breath of Hope and the members is what I love to do, my children and family are also what I love but in many ways - BoH has become a family.
Thursday, August 30, 2007
I read this quote and thought of the journey that a family and friends travel when having a child with congenital diaphragmatic hernia. I also thought of how NOT simple and how simple the treatment for CDH - surgery, repair the diaphragm. It sounds so simplistic - yet it isn't and there are so many factors that determine if the little spirit will survive and be the amazing kids that all these survivors of CDH are - or become the amazing spirit that we know they are in heaven.
One of our babes is going through surgery today at John Hopkins and another babe just went through the Tracheal Occlusion in Rhode Island with some issues arising. We hope that the simplicity of our prayers, hopes, thoughts and lung function chants meet with survival of these two little spirits.
Wednesday, August 15, 2007
And those out there that are the irritation - know who they are....
Saturday, August 4, 2007
Effective Date of Exemption - May 17, 2004 ;-)
Yahooooooo! All that paperwork, the late nights, the editing, the reading and research PAYED OFF!
Monday, July 30, 2007
I liked this. I had to share because I believe at Breath of Hope we give credit where it is due when a good idea is shared, no one takes credit for a job or producing something that benefits all members. Our Newsletter was a combined effort. Without those members submitting stories, without members donations and without the support, encouragement and inspiration of all - it couldn't happen.
As a group that will take credit for all efforts in our endeavors to bring awareness to Congenital Diaphragmatic Hernia we will succeed. There is strength in numbers.
I also believe integrity is doing what you say and saying what you do. My supervisor placed in my review document for my daytime paying job. BoH is what I do to satisfy my heart.
Sunday, July 15, 2007
If you want a child - truly want a child - it does not matter their imperfections and if it does perhaps that may be an imperfection within? No judgement here - some want the perfect life but those of us that have had children with a birth defect - we know this world is imperfect.
Yet sometimes it is the imperfect things in life that are truly the way things should be and should be appreciated, loved and embraced. In doing so you learn to love yourself and then can love others too.
Melissa and Bennett-Chadlen - Thank you!
Links for Living with Trisomy 13 are under the Support Links - and her wonderful letter is also in these links. I encourage everyone out there to read these and start spreading the word to those out there!
Nimkee, I will be sure to help raise the THUNDER for this! ;-)
Saturday, July 7, 2007
Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 live births in the
Monday, July 2, 2007
The IRS contacted us a few weeks ago, we had two minor things to complete - update and one should be on the way to us and then to the IRS within the next week. We are on track to have 501(c) (3) approval very soon and that will open the flood gates for more work to be done. We are amazed that they needed two minor things from us!
We also started a new "Thoughts & Prayers List" for our members. Thank you Luke and Jordan - your Moms' were the inspiration.
And our website is progressing. Good things come to those who wait. "Patience is a virtue, catch it if you can, found seldom in a woman and never in a man."
Saturday, June 23, 2007
Tuesday, June 19, 2007
Sunday, June 17, 2007
Immortality, rebirth, industry, order, purity, soul, chastity,
messengers between worlds, secret wisdom
In dreams, the bee represents approaching death: one's soul is buzzing
off. They have often been viewed as brave, industrious, clean,
politically harmonious, and aesthetically gifted; these qualities
provide extensive fodder for symbolic representation. The bee
represents perfect community, and although it is weak in body, it is
strong in spirit and wisdom.
In Egyptian culture, the bee is associated with royal hierarchy
because of their monarchic organization, industry, creative activity
and wealth. In Paradise they were the 'little winged servants of God'
only changing to brown after the fall, and, with Eagles, are the only
animals that have access to heaven.
Friday, June 8, 2007
To give a Breath of Hope, when the worst experience happens. To have a doctor tell you your unborn, newly born or still born child has Congenital Diaphragmatic Hernia and has a 50/50 chance. Even if they survive it, that they might have health issues.
To give a Breath of Hope....