CHERUBS Telethon on April 30th

Dear CHERUBS Members and Friends,


This is going to a long, very honest letter....

CHERUBS is in trouble. Our 22 year old charity will not be able to keep our doors open much longer. Maybe 2 months.

A lot of money goes out... even with an 8% overhead. Totebags, financial grants, research grants, information to families and hospitals, the web site programming, research programming, conferences, printing, shipping, etc. We average $10,000 in expenses each month.

Last year over half of our donations were allocated... meaning they came in and went straight out to research. Which is wonderful for much needed research. But it's hard to keep our doors open.

Only 2% of the families we help give back. That's the nature of CDH. It's financially devastating to families. Those with the means to really help tend to give to their hospitals or start their own projects, and again, that's great for the cause. But not so easy on the charity that helps the families directly. If our community doesn't fund our work... no one will. We receive no government or grant funding. $0. We are solely funded by donations and fundraisers and a whole lot of prayer and hope.

It takes $200,000 a year to fund all that we do. That's a drop in the bucket compared to other charities our size and we all know that other causes with the same occurrence rate receive billions. Right now, our main fund has $1500 in it. Yes, you read that correctly.

We've cut expenses, we've cut services, we've put Jason on part time and I now work an average of 70 hours a week right now (I am not hourly). And still, we are doing more now for CDH than ever. We have started as many new projects as we can that come without costs, the research database is live, we are working with 2 huge CDH research collaborations, we were published last year, I am giving TV interviews once a month, we are stalking President Trump for his salary donation and I'm still stalking Nicholas Sparks, ACDHO is doing great things, we just made the first CDH commercial and have 3 stations interested in airing it. I travel a lot for research but boy can we stretch a penny to a dollar. We are so close to more NIH research money for these kids, 4 bills up on Capitol Hill this year. We have many new CPAB members and a few more new BOD members. We added a fundraiser who will start soon. We have an amazing awareness team working so hard this month and every month. And so many great new volunteers. We have families chipping in to hold events.

We are doing amazing, incredible, game-changing things. We can't stop now. And if we stop, who will help these kids? We provide 95% of the world's services for CDH. Let that sink in. If we sink, so does 95% of the world's services and progress for CDH. We cannot let CDH win. That's not an option!

I dreaded writing this.... it's a tough pill to swallow.... I'm fairly prideful and this is my baby... but it takes a village. And as you know, CDH has nothing. So I'm fighting harder. Our volunteers are fighting harder. Our charity is fighting harder. Will you fight harder with us?

We have a telethon going on this Sunday on our Facebook page at http://www.facebook.com/cdhsupport

Please donate if you can.

Please call in and share your stories.

Please ask family and friends to donate.

Please help us to not only continue our work but to grow and do all the things families need us to do.

Sincerely,

Dawn M. Torrence Ireland
CHERUBS President & Founder

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...