PRESS RELEASE: New Organization Leads the Way in CDH Research

PRESS RELEASE:
For immediate release

New Organization Leads the Way in CDH Research

20 year old charity expands to raise survival rates for birth defect.



WAKE FOREST, N.C. – July 7, 2017: The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support  - CHERUBS - is undergoing an organizational restructuring and will now be called CDH International  (www.cdhi.org) which will be focused on Congenital Diaphragmatic Hernia (CDH) research, while CHERUBS will continue to provide support to CDH families.

“I am stepping down from my leadership role in CHERUBS and will be leaving it in the very capable hands of Tracy Meats, who has been with the organization for over 10 years” said Dawn Ireland, founder of CHERUBS. “She will manage the parent support efforts that we are known for and CDH Families will continue to receive the same great support they’ve come to count on.”

CDH International will be an umbrella organization providing valuable research, securing NIH funding and grants, and creating an accreditation center for CDH hospital clinics. These new components will help better serve the CDH community worldwide by raising the standards of care and propelling research.

“We hope that the CDH Care Center accreditation program will push hospitals to do radical new things for CDH to raise survival rates,” Ireland stated in her new role as President of CDH International. “It's unacceptable that some hospitals have a 50% survival rate while others have 90% or 100%.  We are very excited to work with the research community to better serve and make a direct contribution in saving more lives of children born with Congenital Diaphragmatic Hernia while bettering the quality of life for survivors.  The future is looking much brighter for the fight against this devastating birth defect” she continued.

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About CDH:

Congenital Diaphragmatic Hernia (CDH) is a birth defect, with an unknown cause, which effects 2,500 babies worldwide and 1,600 babies in the United States each year. Approximately 50% of these babies will die each year. During gestation, the diaphragm fails to fully form often allowing abdominal organs to reach the chest cavity, restricting lung growth.

About CHERUBS:

CHERUBS was created in 1995 to provide information and support services to families affected by Congenital Diaphragmatic Hernia, raise awareness and promote and fund research into the causes and best treatments of CDH.  Learn more at http://www.cherubs.org

About CDH International:

CDH International was created as a global initiative to stop Congenital Diaphragmatic Hernia by working with researchers, other non-profits and families to better utilize, fund and promote research.  Learn more at http://www.cdhi.org

Media Contact:
Dawn Ireland, President
(919) 610-0129
This email address is being protected from spambots. You need JavaScript enabled to view it.


News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...

 
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2017 - News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...