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!
Sunday, August 31, 2008
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).
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/.
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/.
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