Featured Volunteer: Hope Clyde

Featured volunteer of the week is Hope Clyde. Hope Clyde is a CDH International Parent Advisory Board Member, CDH Support Assistant and Utah State Representative. 

"Hey there! My name is Hope Clyde! I have been a member of CHERUBS since Oct. 2001 when we got diagnosed with our son, Tyler. In 2015, I finally committed and became an official volunteer! I had been doing it all for 14 years, but I'm official now!

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Featured Cherub: Daniel Rosamonda

CDH Journey written by Marcy Rosamonda, cherub Daniel’s mom:

"From day one Daniel had to fight to live but the surgeon thought he had a small hole because he was stable for surgery when he was 4 days old. When they got in there they discovered that not only was half of his diaphragm missing, he had 1/3 of his liver up, as well as all of his bowels and stomach. The surgeon used a goretex patch to repair the hole. He was 12 days old when we finally got to hold him, only because dad had to go back to work and we had traveled from Idaho to Portland, Oregon, to have Daniel. In total, he spent 59 days in the NICU, and while there he got a gtube placed to drain his stomach because he had pyloric stenosis.

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CDH Family Picnic in Peoria, IL on 9/16/18

Please join us for a CDH Family Picnic in Peoria, Illiinois, on September 16th, as we celebrate our miracles, whether they are here with us, or watching over us from Heaven.

Food and drinks are provided and there is a playground for the kids to play on.

Any questions on attending please contact our Medical Board Advisor, Kristin Aigner, at This email address is being protected from spambots. You need JavaScript enabled to view it. .  See the event page for more details at https://www.facebook.com/events/1137042909782780/.

 

39th Annual Race to Indy and Zipoff Family raise funds for CDH International

CHERUBS would like to thank Trish Zipoff and the Mustang Club of Indianapolis for raising $1,000 for CDH International. The 39th Annual Race to Indy took place July 28th in Danville, IN.  The show had 252 cars entered this year.
 

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2nd Annual Fundraiser at Glory Days in Burke, VA for CDH International

CHERUBS would like to thank Lisa Baxter, the Virginia State Co-Representative for CHERUBS, for holding her 2nd annual fundraiser at Glory Days in Burke, VA. Thank you to Glory Days for donating 10 percent of their profits to CDH International, $700 was raised on July 23, 2018.

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Utah CHERUBS Get Together

Utah CHERUBS members recently got together on July 13 and July 14, 2018.  Utah families in attendance at the 2017 CDH International conference had such a great time, they wanted to get together again this summer!  It was a great weekend of fun, laughter and bonding. 

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2018 Light Ups for CDH Awareness Day

Buildings and Landmarks in the United States and Canada lit up blue, pink and yellow on April 19th for CDH Awareness Day.  The CN Tower will light up on April 28th in Toronto, Canada.

The following locations lit up for CDH Awareness Day in 2018:

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Lizzy's 6th Annual Walk for CHERUBS

On June 18, 2018, CHERUBS Canada Rep. and her cherub, Lizzy, held Lizzy's 6th Annual Walk For Cherubs. It was a huge success again this year! It was a very hot day, but they still had 30 supporters attend this year and walk 10KM to raise CDH awareness. With such an amazing community, Liz was able to raise $2,648 this year bringing her six year total to $14,525. $14,525 is a huge accomplishment and we are so proud of Lizzy!

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CDH International Telethon on April 19th

On CDH Awareness Day, April 19th, CDH International interviewed families, researchers, doctors and volunteers as they all shared stories, tears and trials as we raised awareness and money for Congenital Diaphragmatic Hernia via live video on Facebook.  We had guests live from around the globe, truly an international day of CDH Awarneess.  The goal was to reach $50,000 over 15 hours during a live Facebook telethon.  Donors were able to make a donation by calling in, donating on any of the member's Facebook telethon fundraisers or directly on the website.  As the telethon closed, CDH International surpassed the goal bringing in $51,388.  This number is on the rise, where the final total will be announced on April 30th.  Facebook fundraisers for the telethon are still ongoing and the charity waits for any checks arriving by mail.

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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. 

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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! 

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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. 

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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...