Yes, it is early but we are hoping to get a jump on this project and are requesting photos of YOUR individual "Face of CDH" for our 2013 Faces of CDH Calendar. These make wonderful gifts for under $20 and people do take notice of these calendars when hung in offices! It gives the opportunity for people to raise CDH Awareness.
Please email your pictures to pictures@cdhawareness.org or elizabeth@breathofhopeinc.com (sometimes our email accounts become too full when we request pictures! The best format is .jpg and we do ask that you sign a release so we can use your photos. We want both CDH Heavenly and Earthly Angels, even ultrasound pictures if you would like to share your soon to be CDHer!
We hope to have the calendar out in early November this year and deadline for submissions are November 2, 2012.
Thank you - always!
Doctors, Families Rally for Cure for Deadly Birth Defect
Parent's Perspective
KSDK.com News Report of Saint Louis Children's Hospital Press Conference
Thursday, August 30, 2012
Thursday, August 9, 2012
Dear Friend,
You have an exciting opportunity to help us make even more of a difference inour community. GreatNonprofits – a review site like Amazon Book Reviews or TripAdvisor – is conducting an awards campaign to identify the top-rated social justice nonprofits in the country.
Won’t you help us participate in the awards by posting a review of your experience with us? The awards deadline is October 31st, 2012. All reviews will be visible to potential donors and volunteers. It’s easy and only takes 2 minutes! Go to http://www.greatnonprofits. org/reviews/write/breath-of- hope-inc/campaign:social- justice-2012/
You have an exciting opportunity to help us make even more of a difference inour community. GreatNonprofits – a review site like Amazon Book Reviews or TripAdvisor – is conducting an awards campaign to identify the top-rated social justice nonprofits in the country.
Won’t you help us participate in the awards by posting a review of your experience with us? The awards deadline is October 31st, 2012. All reviews will be visible to potential donors and volunteers. It’s easy and only takes 2 minutes! Go to http://www.greatnonprofits.
With your help, we can gain greater visibility in the
community.
Thank you!
Thank you!
Tuesday, July 3, 2012
3rd Annual CDH Summit - You can View!
Our 3rd Annual CDH Summit in Colorado was amazing. We have the following links to the "raw" presentations we had a live stream available for everyone to attend. Thank you all who tuned in and please bear with these - new technology and we are all learning! We hope to do this for all future summits too! Nothing compares to being there and meeting the amazing speakers and other families. Truly, there is healing and lifelong friends confirmed at these meetings! No one goes away without a hug!
We would also like to thank each of those that presented information or their stories.
We would also like to thank Amber Burton of Team Abel - Colorado Chapter of Breath of Hope and Eva Schaeffer who both helped to put together all the events and coordinated everything so well! Your work is invaluable!
We would also like to thank each of those that presented information or their stories.
Jason Gien, MD - Advancing the Care of Infants with CDH through Laboratory Research
Susan Marshall, NICU Dietician - CDH Infants - Nutrition for the CDH Neonate
Elizabeth Doyle-Propst - Post Traumatic Stress Disorder - CDH Parents Experience
Katie Edic, 29 year old CDH Survivor - also in the above link video footage
Timothy Crombleholm, MD - Fetal & Pediatric Surgery, Surgeon in Chief-Children's Hospital of Colorado
Julia Wynn, MS - Certified Genetic Counselor/Research Coordinator, New York Presbyterian Columbia - DHREAMS
Meaghan Russell, MPH, PhDc, Pediatric Surgical Research Laboratories, MassGeneral Hospital for Children and Anna Frangulov, Research Coordinator, Boston Children's - both with the Pediatric Surgical Research Laboratories for the CDH Study
We would also like to thank Amber Burton of Team Abel - Colorado Chapter of Breath of Hope and Eva Schaeffer who both helped to put together all the events and coordinated everything so well! Your work is invaluable!
Thursday, May 31, 2012
3rd Annual CDH Summit in Aurora, CO
Our third annual summit will be held in Colorado this year. The dates are: Wednesday, June 27, Thursday, June 28 and Friday, June 29th. Hotel reservations must be made by June 5, 2012.
Please sign up here so we can have an accurate headcount and below is the tentitve agenda:
11am-12noon Susan Marshall Dietician/Nutritionalist from Children's Hospital Colorado (CDH nutrional info followed by Q&A)
Lunch 12-1pm
1pm-5pm Museum of Nature & Science followed by dinner (we can pick a place and invite families to join us or families can do dinner on their own)
Thursday June 28th
9:30am-10:30am NICU social worker (Name TBD)
10:30am-11am Katie Edic, CDH survivor share her story.
11am-12noon Dr. Crombleholme Fetal Surgeon (This is still being confirmed so times may change) CROMBLEHOLME HAS BEEN CONFIRMED
12noon-1pm Dr. Jason Gien CDH Pediatrician specializing in following CDH children in clinic and long term effects/complications of CDH (this specific topic and time is flexible but it's very important to discuss the long-term care of CDH children)
4pm-8pm Family Dinner/Fundraiser at Cici's Pizza
Friday June 29th
9:30am-10:30am Liz McKelvey NICU Nurse (specialized with CDH babies followed by Q&A)
10:30am – 11:30am Dhreams Presentation (Columbia University) Julia Wynn
11:30am-12noon Fetal Maternal Center & NICU Tour
1pm Zoo (if not attainable, Cherry Creek reservoir picnic pavilion for lunch, volley ball, and fun for all)
**Butterfly release will be scheduled for one of these days!**
Updated May 21, 2012 – still working on details and there could be adjustments to the schedule.
Please sign up here so we can have an accurate headcount and below is the tentitve agenda:
Wednesday June 27th
9:30am-10:30am Dr. Jason Gien-CDH/PPHN Research Doctor for University of Colorado/Children's Hospital Colorado
9:30am-10:30am Dr. Jason Gien-CDH/PPHN Research Doctor for University of Colorado/Children's Hospital Colorado
11am-12noon Susan Marshall Dietician/Nutritionalist from Children's Hospital Colorado (CDH nutrional info followed by Q&A)
Lunch 12-1pm
1pm-5pm Museum of Nature & Science followed by dinner (we can pick a place and invite families to join us or families can do dinner on their own)
Thursday June 28th
9:30am-10:30am NICU social worker (Name TBD)
10:30am-11am Katie Edic, CDH survivor share her story.
11am-12noon Dr. Crombleholme Fetal Surgeon (This is still being confirmed so times may change) CROMBLEHOLME HAS BEEN CONFIRMED
12noon-1pm Dr. Jason Gien CDH Pediatrician specializing in following CDH children in clinic and long term effects/complications of CDH (this specific topic and time is flexible but it's very important to discuss the long-term care of CDH children)
4pm-8pm Family Dinner/Fundraiser at Cici's Pizza
Friday June 29th
9:30am-10:30am Liz McKelvey NICU Nurse (specialized with CDH babies followed by Q&A)
10:30am – 11:30am Dhreams Presentation (Columbia University) Julia Wynn
11:30am-12noon Fetal Maternal Center & NICU Tour
1pm Zoo (if not attainable, Cherry Creek reservoir picnic pavilion for lunch, volley ball, and fun for all)
**Butterfly release will be scheduled for one of these days!**
Updated May 21, 2012 – still working on details and there could be adjustments to the schedule.
Thursday, May 3, 2012
Chili's Supporting CDH Research in NJ
Thursday, May 17, 2011 from 4 PM - 11 PM
you can present this flyer above to
HOLMDEL CHILI'S
2105 Highway 35, Suite 101
Holmdel, NJ (732) 671-2273
both dine in and take out orders will qualify for Chili's to donate 15% of the sales to Congenital Diaphragmatic Hernia (CDH) Research at The Children's Hospital of Philadelphia!
Please feel free to share this and pass on to anyone you know!
Thank you!
Friday, April 20, 2012
Volunteers Needed!
We are looking for a few good men and women!
We need volunteers who can dedicate as little or as much time to Breath
of Hope.
Main requirement – we would like you to be at least 1 year from your
child either coming home from the NICU or the date they chose wings over
feet. We know through that first year (and sometimes
beyond) are still trying to gain their bearings from their experiences. This stated, we will allow those who are
within that year to assist with any of these positions.
Awareness Day Coordinators–
we need folks to act as coordinators and distribute our letters, sample
Proclamations and help others find their Representatives on-line or find their
contact information. These are slowly
evolving positions. Must have or be
willing to learn the basic process of the requests and you will learn detail of
how many states and our government work.
State/Regional Advocates –
we have a detailed description of this position and it would be working with
any Chapters formed and helping to get them started. These volunteers would also be requested to
organize a State/Local event each year so families could meet and great one
another. Of course this would overlap
with other positions which also would work with the people who hold this
position. You would also be a go-to
person for all local media and families so you can distribute information.
Scholarship Committee Representatives
– Primarily would review scholarship applications and help award the
scholarships. Position would also have
you research how to promote the Scholarship Program to those who qualify and
ideas for fundraising and grants for scholarships.
Grant Researchers –
Individuals who would research for grants available for Breath of Hope to
apply, we already have the paperwork to apply for grants. We just need these individuals to send us the
contact information to apply for grants.
Care Advocates and Coordinators –
Individuals who can give information and contacts to families who are
expecting, moving to other areas or may need practical information about
hospitals, OBs, In-Home Nursing Companies, Grief Resources and any other
resources that could be needed or required for families. These individuals would also work with our
State/Regional Reps to be sure if our printed materials are needed and/or
desired are distributed.
Editors – do you like to
edit, read or reword things to make them clearer? We would love your input! To review our reference guides and brochures,
website and our Newsletters when they are going to print or out via email.
Fundraising Coordinator –
Someone who would help families fundraise for Breath of Hope’s Programs,
Medical Research to benefit CDH and also assist families in fundraising for
their own family expenses.
Board Members – We need a
few people to add to our Board of Directors!
These are “jacks of all trades” due to the simple fact that Breath of
Hope is a smaller nonprofit public charity.
You will review financials, attend Board Meetings (most via teleconference
– quarterly or if an issue arrises you may need to attend – not lasting longer
than an hour). Board Members over see
all these positions and also are important in the day to day operations of
Breath of Hope.
None of these positions are paid – all volunteer and none are a
full-time job unless you wish it to be one!
Family comes FIRST. We know all too well that family is first. Email us at boh@breathofhopeinc.com and we will send you an application, which is a formality. We will also be working on with volunteers to create position descriptions.
Thank you!
Sunday, April 1, 2012
5th Annual Congenital Diaphragmatic Hernia Awareness Day 2012
We want to thank all of our supporters for wearing their turquoise, writing their Mayors, Governors, Congresspeople, having a walk or run, making amazing food for this event and having fun. It is to celebrate our endurance, our strength, our children's and grand children's strength. To endure this CDH Journey and each is different, is a huge endeavor. We also want to thank you all for remembering the angels who blessed this earth for a time too short for us.
We will continue to feature a Face for CDH - please feel free to send in your photos and a short bio or your whole story and we will feature your child here. Putting a face to CDH makes a huge difference! Email cdhawareness@breathofhopeinc.com
We will also have some volunteer opportunities coming up within the next few weeks to focus more on community get togethers and also next year's 6th Annual CDH Awareness Day!
Again - thank you all!
We will continue to feature a Face for CDH - please feel free to send in your photos and a short bio or your whole story and we will feature your child here. Putting a face to CDH makes a huge difference! Email cdhawareness@breathofhopeinc.com
We will also have some volunteer opportunities coming up within the next few weeks to focus more on community get togethers and also next year's 6th Annual CDH Awareness Day!
Again - thank you all!
Tuesday, March 27, 2012
Face of CDH - Noah's Miracle
In His Parents Words:
The storm began on January 4, 2010, my husband and I was expecting our first child Noah. With him, being our first born, we had high anticipation about the delivery process and becoming first time parents. During the delivery we had our worst fear confirmed. Noah’s heart rate had dropped with every contraction, and a rapid assisted delivery was now required. After a few difficult moments he was delivered but was whisked away to be resuscitated. The nurses and doctors confirmed that he had a birth defect known as Left-sided Congenital Diaphragmatic Hernia (LCDH). Noah was transferred to Children’s Mercy Hospital in Kansas City, MO.
Fortunately, my husband and I did not know the statistical outcomes for CDH. Therefore, our focus was on a day to day evaluation of our son’s status. The days were very long and seemed to be eternal. Our focus was moment by moment, with expectations of a breath, hiccup, wiggle, or eyes opening. I knew there would be no recognition of us, but any response to our voices or touch gave us hope. Since he was on a ventilator for breathing assistance we were unable to hold, touch, or stimulate him for fear of increasing his breathing difficulties. As each agonizing moment went by, his team of specialized physicians relayed more information on CDH and decisions we would have to deal with in the upcoming hours. On day 2, Noah underwent the CDH repair that involved a thorascopic procedure that wasn’t very invasive. Happily, our son was among the few that were able to correct the defect by a primary repair. On the morning of day 3 we received a call from the NICU nurse, she told us that Noah was going to be extubated that morning. As we were driving to the hospital, we noticed the biggest rainbow in the sky. At that moment we knew that Noah had survived his storm. We were very blessed that his hospital stay was only one week.
Our son’s future routine medical examination will include a chest x-ray every six months to make sure there is no reoccurrence. During his childhood, he will visit a team of specialized physicians that will manage his childhood development. This team of medical professionals include: neonatologist, dieticians, psychologist, audiologist, and his surgeon.
CDH is an unpublicized nearly unrecognized devastating birth defect that affects many families every day. Most people do not know anything about CDH, unless they have a loved one that has been born with this unfortunate defect. Advances in surgery and therapeutics have not shown great promise. Therapeutics sustains life minimally. The future is unknown for diagnostics and treatments. Worldwide one baby is born with CDH every ten minutes. The sheer number of infants affected by this disorder should challenge the scientific community to research other avenues of diagnosis and treatment. Please help our family raise awareness of this monstrous birth defect in honor of the angels and survivors of CDH.
Blessings,
David, Tera, and Noah
Monday, March 26, 2012
2012 Virtual Walk/Run for CDH Awareness - March 31st
What to do? Here is one idea from one of the CDH Moms - here is her blog - click HERE
Grab some friends, head out to a local park, neighborhood or anywhere you love to walk and run and run and walk! Take pictures of you in your turquoise and possibly wearing these or the other "bibs" offered:
If these do not print well for you - please feel free to contact us (cdhawareness@breathofhopeinc.com) and we can send you the originals! Take pictures and share too!
Grab some friends, head out to a local park, neighborhood or anywhere you love to walk and run and run and walk! Take pictures of you in your turquoise and possibly wearing these or the other "bibs" offered:
If these do not print well for you - please feel free to contact us (cdhawareness@breathofhopeinc.com) and we can send you the originals! Take pictures and share too!
Saturday, March 24, 2012
More than One Face of CDH
Sofia - an amazingly beautiful, vibrant child who has defied odds with the support of her amazing family and the doctors and nurses who have been part of her amazing life!
For the last 5 years to not only increase awareness of Congenital Diaphragmatic Hernia but also the importance of donating blood, this blood drive has supported the community!
One pint of donated blood can save up to three lives and more if they utilize the blood into blood products which aid NICU babies, burn patients and other surgical patients in need. The only resource for these products is Human Blood, the synthetic scientific stuff just doesn't work as well in our bodies! Please click here to sign up and for further information of this blood drive which several CDH Families including Sofia's family are hosting and have hosted in Kansas City - Click HERE
For the last 5 years to not only increase awareness of Congenital Diaphragmatic Hernia but also the importance of donating blood, this blood drive has supported the community!
One pint of donated blood can save up to three lives and more if they utilize the blood into blood products which aid NICU babies, burn patients and other surgical patients in need. The only resource for these products is Human Blood, the synthetic scientific stuff just doesn't work as well in our bodies! Please click here to sign up and for further information of this blood drive which several CDH Families including Sofia's family are hosting and have hosted in Kansas City - Click HERE
Noah - whose family is also joining in to make this blood drive a success!
We know of one CDH infant who went through a total of 5 gallons of blood and blood product. Yes, GALLONS of blood - for an infant. Many do not realize that the most fragile of infants utilize a tremendous amount of blood in the hospitals, it saves lives and also gives many families the opportunity to know and love their children for the short duration of their lives on this earth. It is a gift you can give and it cost nothing but about an hour of your time! You will feel good doing it and perhaps get some juice and cookies after! Thank you!
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