Wednesday, June 30, 2010

Save the Cherubs CDH Awareness Campaign - Our First Expectant Family Photo Shoot

Many thanks goes out to photographer Martha-Cate Spencer, for taking these gorgeous photos!

The models for this photo shoot are Oz's amazing parents Kendrah Kidd and Chris Ward!

Thank you to Oz for not giving your mom any trouble during the hot photo shoot and thank you Kendrah and Chris for being such good sports and so willing to help other CDH families even while you're in the midst of your own CDH journey!

Save the Cherubs CDH Awareness Campaign - Our First Grieving Family Photo Shoot

Many thanks goes out to photographer Martha-Cate Spencer, for taking these gorgeous photos!

The models for this photo shoot are Zoe's family;  Aaron, Erin and Cole Fisher.

Thank you to the Fisher family for allowing us inside their home, for letting us make them cry and most of all... for sharing Zoe.













Tuesday, June 29, 2010

CDH Charity "Real Hope for CDH" needs votes in the Chase contest!

There is only 1 CDH charity still standing in the Chase Community Giving Contest - Real Hope for CDH.

All the other CDH charities fell far too behind to possibly make the top 200.  :(      Charities have to make the top 200 listed (first 10 pages of rankings) - not be ranked less than 200.  

Real Hope for CDH is barely hanging on! Let's work together to get at least 1 CDH charity in the top 200! They need votes!!!

You only have to vote once!

If ALL CDH parents, grandparents, survivors, nurses, doctors, family and friends... who care about CDH babies voted, we can raise $20,000 for CDH research for this amazing charity.

Real Hope for CDH is an amazing charity that was created by the families of the patients of Dr. David Kays at the University of Florida / SHANDS. Dr. Kays is the founding father of "gentle ventilation" for CDH babies.

100% of money won in this contest will go directly to CDH Research!!!!!!!

Please vote and repost!!!

CDH Charity CHERUBS needs votes in the APX contest on Facebook

CHERUBS needs your help.  We are in a contest on Facebook to win $100,000 for Congenital Diaphragmatic Hernia Research and Support.  

We are asking ALL groups, charities, families and friends to endorse us and help us to help babies affected by CDH. 

Here is how to vote:

1. Go to
2. Then click LIKE.
3. Next click the "Start nom and voting"
4. Click on the blue logo for Eastern charities
5. Scroll down (load more if necessary) and find CHERUBS and endorse us!

You can vote once EVERY day! Repost in honor or in memory of your cherub!

Sunday, June 27, 2010

CHERUBS 2010 Congenital Diaphragmatic Hernia Conference Lectures

CHERUBS 2010 International Member Conference
May 13 - 16, 2010
Orland, Florida 

The hotel was wonderful, the cherubs miracles and we learned so much from the researchers and each other.  The weather was great.  We truly could not have asked for a better week!!!

The kids were adorable dressed as cherubs for our Save the Cherubs campaign - we got some AMAZING photos, including photos at Disney, with Mickey and Minnie, at the pool and the first Parade of Cherubs and CDH balloon release.  And they sung the CDH Kids Song for us again this year!

We met so many wonderful families!  The pizza party, introductions and each day was wonderful.  CDH Research Day included slide shows, information and research participation.   CDH Support Day included many round-table discussions on every topic dealing with CDH.  CDH Awareness Day included everyone learning about easy and fun ways to raise awareness.  Everyone left the conference with new friends, lots of new information and excited to go home and start working to help other CDH families!  It was an absolute pleasure to meet so many wonderful parents and cherubs (and grandparents and other family members too!) that we talk to on-line all year round.  Good-byes were definitely hard this year.

This was our 10th anniversary of the first international Congenital Diaphragmatic Hernia Conference, also held in Orlando.   We are so proud of our conferences and guest speakers!  Put together by volunteers and medical professionals with CDH experience and built upon 15 years of working together to offer the most services and information and support for families at our conferences - while keeping them fun and affordable. They aren't just CHERUBS members getting together and hanging out, they aren't conferences about CHERUBS at all - they are truly 100% about Congenital Diaphragmatic Hernia!    They have included so many incredible doctors and researchers.  We've also had representatives from CHERUBS UK, CHERUBS Australia, the Olivia Raine Foundation, Little Lambs, Real Hope for CDH and other great ACDHO organizations attend our conferences!   Not to mention members from all across the U.S. as well as England, Ireland, Australia, Italy, Mexico and Canada!

Many families participated in CDH genetic studies by giving blood samples at the conference.  We were fortunate to have 5 researchers participate!  Not only did they speak on their research and share new information with us but they sat in on round-table discussions and learned from parents as well.   We will post more about the researchers and research and how you can participate in the next few days!  :)

CHERUBS also participated in 2 medical conferences and we have quite a bit of CDH research and projects going on that we will post about soon!  It was WONDERFUL to see the surgeons wearing our ribbon and buttons, to hear all the lectures on CDH, to talk to them about CDH and share our own information with them.  So many came up to us to thank us for our work, gather materials for their patients' families, to tell us they signed the petition against the trademark and were rooting for us, to ask us questions about how to deal with CDH families.    One conference even had a member wearing wings during their awards ceremony, escorting award winners to the podium.   This same conference had a speech about CDH and recognized CHERUBS and our work - we were even cited as their reference for a lot of their research information.   We even found a few sponsors along the way.   CHERUBS is the first charity to ever attend these events, we are so honored to be a part of both conferences!

It was a wonderful, productive, supportive and very beneficial week for the CDH Community!  More photos, details and videos coming soon!

We hope to see everyone next year!



2010 CHERUBS Conference Lectures

The quality isn't exactly professional but we try hard to bring you as much information as possible through video! 

Meaghann Russell, MPH and Mauro Longoni, MD
(MassGeneral CDH Clinic, Boston, MA)
CDH and Genetics

Part 1 -
The rest of the videos are available to view at

Marc Arkovitz, MD and Julia Wynn
(New York Presbyterian Columbia / DHREAMS)
CDH and Genetics

Part 1 -
The rest of the videos are available to view at

Bella Belleza-Bascon, RN, MHA
(Texas Children's Hospital / Fetal Center, Baylor College of Medicine)
CDH and Genetics

Part 1 -
The rest of the videos are available to view at

Conference Schedule:

Thursday, May 13, 2010

7:00 - 9:00 pm - Pizza Party and Introductions

Friday, May 14, 2010 - CDH Support

8:00 am - 8:45 am Round Table Discussions Session 1

  • For CDH Survivors (choose one)
    • Physical and Occupational Therapies
    • Feeding Issues
  • For Grieving CDH Families (choose one)
    • Faith & Doubts In Grief
    • Dealing With Anger
9:00 am - 9:45 am Round Table Discussions Session 2

  • For CDH Survivors (choose one)
    • IEPs for School Age Children
    • Early Intervention for Infants & Toddlers
  • For Grieving CDH Families (choose one)
    • Grief and Siblings
    • Dealing With Special Days
10:00 am - 10:45 am Round Table Discussions Session 3

  • For CDH Survivors (choose one)
    • Dealing with Family & Friends
    • Marriage & Having a Special Needs Child
  • For Grieving CDH Families (choose one)
    • Dealing with Family & Friends
    • Marriage & Grief
11:00 am - 11:45 am Round Table Discussions Session 4

  • For CDH Survivors (choose one)
    • Pregnancy After CDH
    • Helping Other CDH Families
  • For Grieving CDH Families (choose one)
    • Pregnancy After CDH
    • Creating Something Good From Sadness

Saturday, May 15, 2010 - CDH Research

8:00 am - 11:00 am - Guest Speakers On Current CDH Research Studies

8:00 am - 9:00 am  - Meaghan Russell and Mauro Longani from Mass General

9:00 am - 10:00 am  - Speaker Information coming soon!

10:00 am - 11:00 am  - Speaker Information coming soon!
11:00 am - 12:00 pm  View Research Booths, Sign up for CDH Research Studies

Sunday, May 16, 2010 - CDH Awareness

8:00 am - 8:30 am - "Current and future global efforts to raise CDH Awareness" by Dawn Williamson, President & Founder

8:30 am - 9:30 am - Group discussion on how we can raise more CDH Awareness as a community

9:30 am - 10:30 am - Group disccussion on how families can raise CDH Awareness in honor and in memory of individual cherubs.

10:30 am - 11:00 am - Saying Good-byes