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Lizz L.

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CHERUBS - The Association of Congenital Diaphragmatic Hernia Research
August 2, 2013

As an adult CDH survivor, I had never in my life known anyone else who had heard of the condition, much less had experienced it. As far as I knew, I stood alone. When I found CHERUBS, I immediately became connected to thousands of families who had been through the nightmare of CDH and gave me insight into what my own parents went through.
As a parent myself, I have had to face the possibility that my own children may also be victims of CDH. Thankfully, they were all born perfectly healthy. This also enables me to give hope to other survivors that they will be able to become parents themselves and lead "normal" lives.
Through CHERUBS I have made some of the best friends a person could ask for and I cherish that.

Ways to make it better...

If I had to make changes to this organization, I would...

Find more money for the wonderful services they provide to families and the funding for research.

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Volunteer

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research
May 3, 2012

I am an adult CDH survivor. Until I stumbled upon CHERUBS in a late-night, curiosity-filled internet search session about the mysterious birth defect with which I had been born, I had never met anyone else who had it or even had heard of it. Now, thanks to this wonderful charity, I have met many families who have struggled through the devastation that CDH has wrought upon thier lives. I was extremely lucky to have survived. I have met many surviving children and a couple of adults, but I have also met families who have had to face the overwhelming tragedy of losing their children. One of the reasons there are more young children survivors than adults is due to the research that CHERUBS has helped fund, making the survival rate increase. The members of CHERUBS are like a big, international family, connected not by DNA, but by CDH. As a volunteer, I have seen first hand the tireless dedication that is put into CHERUBS and the shoestring budget on which it is run. Due to financial reasons, I am not able to donate to CHERUBS like I'd love to be able to do, but when I am able, I will be sure to put them at the top of the list. Until then, I volunteer when & where I can & I enjoy every minute of it!

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

MY ROLE:
Volunteer

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research
June 7, 2011

I was born in 1972 with CDH. Until I found CHERUBS, I had never known anyone who has ever heard of CDH, much less known of anyone else who'd been born with it. Thanks to this wonderful charity, there is an international network of families who support each other.
When I was born, the survival rate was barely over 10%. Thanks to CHERUBS and the dedication of the volunteers who rasie awareness everyday and help raise funds for research, the survival rate today is 50%. We still have a long way to go!

The Great!

I've personally experienced the results of this organization in...

getting to know other CDH survivors as well as helping to support grieving families.

Ways to make it better...

If I had to make changes to this organization, I would...

make it more well-known.

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

MY ROLE:
Volunteer & I help plan our biggest annual fundraiser.