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CDH International

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Pediatrics Research

Mission: For a quarter of a century, CDH International (formerly known as CHERUBS) has fought Congenital Diaphragmatic Hernia. Our only mission at CDH International is to help families affected by CDH by searching for the cause, prevention and best treatments of Congenital Diaphragmatic through research and awareness while supporting the CDH community. We focus on the whole CDH community, not personal motives or missions, one patient, one hospital or one country. We believe in supporting all CDH families, no matter the medical choices that they make for their children. Our mission is to provide accurate and timely information so that parents can make the best educated decisions for their babies. Our goal is to create and provide as many services as possible so that no CDH family feels alone. We have accomplished that for over 6300 CDH families.

Results: * Over $1,000,000 raised * World's largest natural history CDH Registry * Collaborations with research centers around the world * Patient Advocacy with the CDH Study Group * Collaboration with the World Health Organization * Collaborations with the Rare Disease Community * Proclamations from the US Senate and 50 Governors * Work with the NIH * Light Ups of major buildings around the world * Lobbying on Capitol Hill for CDH Awareness and Research Funding for hospitals * Founding member organization of the Alliance of Congenital Diaphragmatic Hernia Organizations * Mentored over a dozen new non-profits * NGOs in 3 countries * Providing free support and information to over 6300 patient families in 70 countries

Target demographics: families of babies born with Congenital Diaphragmatic Hernia

Geographic areas served: International

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Community Stories

249 Stories from Volunteers, Donors & Supporters

15

Board Member

Rating: 5

I am the mom to an 8 year old CDH survivor. I have been a member of CHERUBS since she was born, started serving on committees approximately 5 years ago, and have been a member of the board for almost 3 years. I served as the Treasurer for CHERUBS for about 2 years, and then moved to the role of Vice-President about a year ago. Through volunteering in these roles, I have had an inside view of CHERUBS for many years and am aware of all facets of the charity- the volunteers, the members of all 3 boards, and the finances. I am proud to say that CHERUBS is run by a team of wonderfully dedicated volunteers led by the charity's sole employee, the President of CHERUBS, Dawn Williamson. It takes a lot of hours, and people from many areas of the world, and with many talents to serve the CDH community. All of the volunteers that I have come in contact with from State Representatives, to Hospital Angels, to those who work on the various committees, to the Parent Advisory Board, and the Executive Board serve dutifully with professionalism and respect to see that families get the help they need while working to raise awareness of CDH and money to further research that is so desperately needed. From my role as Treasurer, and with continued knowledge of the finances of the charity as an executive board member, I can assure you that every donated dollar is used to the best of its ability to help the cause. Meticulous care is taken to see that donations are spent only in the manner with which the donor specifies (research, family assistance, awareness, etc.), and that money is never wasted. I am proud to count myself as a member of the CHERUBS team.

1

Client Served

Rating: 5

Hi my name is Evelyn in a parent of 3 . My youngest was diagnosed with cdh and unfortunately passed on and earned his wings. I found Cherubs during my time of greiving and found comfort in the words of inspiration that they gave me. I suppprt them always in memory Of my son and all that have earned their wings and those that continue to suffer. Cherubs helps new members and the old ones aswell. They educate us with new findings and updated info. I'm extremely proud of all the members and staff. Cherubs rocks!!!!!!!!

1

Client Served

Rating: 5

CHERUBS is the world's first and largest Congenital Diaphragmatic Hernia (CDH) support group, and research group. It is 100% volunteer driven,100% of the funds go to help families, and promote awareness and research to find a reason why this happens to our children.

I use the term "our", because until March 1, 2010 I had never heard of CDH either. My partner, Chris, and I were expecting our first child, and how happy we were! That day we were going to see our baby at its 19th week ultrasound and find out if we were having a boy or a girl. We found out we were having a boy, and also that he had CDH. We were told at best he had a 50% chance for survival, sent home with a choice, and no information about CDH or anyplace we could find support. We found CHERUBS through a Google search for CDH, and how lucky we were. Not only did we find a wonderful, loving community that embraced us, but CHERUBS is also headquartered in Raleigh, NC, which is about 90 minutes from our house.

We had the pleasure of meeting Dawn in person at The Great Human Race held March 23, 2010 in Durham, NC. CHERUBS was one of many groups that participated, and we walked - we walked for our son who was at 23 weeks, we walked to remember those children who have been taken by CDH, such as Shane, and for those who fight everyday to live with this condition. In April, we received our HOPE tote bag from CHERUBS, filled with items other families have made or purchased to help expecting CDH families like ourselves prepare for their child's arrival and time in the NICU. In June, we also participated in a "Save the Cherubs" photo shoot of local families, as the expecting family. These photos were used to create awareness campaign posters. These events are just a small example of projects organized and executed by CHERUBS.

Through the weeks after our diagnosis, CHERUBS was with us every step of the way, every appointment we would update the community, and voice our fears and our hopes. The whole CHERUBS community was praying for us the day our son, Oz (Hebrew for strength) was born, July 21, 2010. Within 30 minutes of life, the doctors, who monitored us rigorously to prepare for this moment, knew our Oz wasn't going to be in the 50% who survive. My family called CHERUBS. We had 2 CHERUBS moms there by our side within 2 hours, and to meet our son. They brought him a blanket and teddy bear, they held his tiny hand, and stayed until he was no longer with us 10 hours later. The next day, CHERUBS board of directors came together to form the Oz Kidd-Ward memorial scholarship to assist CDH survivors going to college, what an honor for our family. Several members also attended Oz's funeral July 27, 2010. They has been a shoulder and confidant these weeks after Oz's passing. Without the support of the CHERUBS community, I know making it to this point would have been much, much harder.

Every week, every day more babies are brought to our attention who have just been diagnosed, who are fighting, and who have heartbreakingly passed, and CHERUBS is there for each family to provide support.

1

Client Served

Rating: 5

I am currently 34 weeks pregnant with a baby diagnosed at 20 weeks with CDH (Congenital Diaphragmatic Hernia). We were told our baby had little chance of survival (50% or less). He is our first pregnancy/child. We were devastated, lost, felt helpless, and worse, knew no one that had been through the same thing.

We came across Cherubs one day - we joined right away. We were sent a care package in the mail a few weeks later, filled with thoughtful items for our imminent, long journey in the NICU. We have now been able to talk to many families to give us hope and comfort. Now, I am only a few weeks away from delivery and we have confidence that we have the support we need to get through the hardship we have ahead, thanks to Cherubs.

1

General Member of the Public

Rating: 5

My grand daughter was born with CDH. My daughter was having a hard time with her baby's condition and the doctors were telling her that her daughter would probably not survive. CHERUBS made a big difference in her life when she found other families in the group that let her know there was hope for her baby to get better. I appreciate everything the support group has done for them.

1 Katie C.

Client Served

Rating: 5

My daughter Sofia was diagnosed with CDH at 18 weeks into my pregnancy. I spent the first several months scared and confused while my daughter had her first surgeries and struggled to live. I had never heard of CDH and didn't know what to expect.

I was contacted on MySpace by the founder of CHERUBS during that time. Dawn had found me by searching for people who had listed CDH on their profiles. She had invited me to join the CHERUBS forums and get to know other CDH families.

I gained access through the CHERUBS web site to detailed information about my daughter's condition and to many families who were going through what I was with CDH and the families who had already overcome the long hospital stay that encouraged me daily. They also asked for prayers for my daughter when she had to have her patch re-attatched after she grew too fast.

The founder and members have always been very positive and are always focused on helping the families out by providing totebags with info and goodies for the new parents, prayer chains for the CDH babies and kids who arent doing well or need surgery, or having baby showers to provide the CDH families with several items. The group is also fighting daily to push research on CDH to find the cause and a possible more suitable fix than a patch that won't stretch when the child grows on next to no budget. They are spreading awareness to the public that a virtually unheard of birth defect called CDH will cause 1/2500 babies will be born with their stomach contents out of place, and of whom only 50% will survive.

My daughter did survive, but the son of a friend I'd met through CHERUBS didn't. The founder of the group, Dawn, drove 3 hours one way to be with the family at the hospital to support them as their son struggled to live. Again, she drove 3 hours one way to attend the funeral for their son several days later.

CHERUBS supports many families around the world and without the support group I would be totally lost. The members have become an extended family to me.

I highly recomend this support group to anyone who is dealing with CDH or just wants to know more about CDH.

CHERUBS

Board Member

Rating: 5

CHERUBS mission is solely to help babies born with Congenital Diaphragmatic Hernia and their families through research, awareness and support services. For 16 years we have provided free services to make the journey of CDH a little easier for 1000's of families around the world.

CHERUBS is a public 501(c)III non-profit organization run by caring parents, grandparents and survivors with a medical advisory committee composed of the leaders of CDH Research. Our members and volunteers have hearts of gold and work as a team putting the big picture of helping all CDH babies first.

We are run as a charity - with the heart of a charity. All donations go to further our services, all of our services and project go to help these babies. We never trademark or copyright, we promote CDH Awareness rather than our own branding, we have never spent a penny in legal fees, we work with other charities and organizations, we support all families and have helped many other CDH charities get started directly and indirectly. Our focus is the always, always the babies and families.

It is this open-hearted outlook and determination that has made us the world's first, largest and most active CDH charity and that has made us successful in helping families.

Review from Guidestar

1 SanJuanita F.

Volunteer

Rating: 5

Cherubs is a great organization for families affected by CDH. I found out that my daughter was going to be born with left CDH when I was only 21 wks pregnant. I did lots of research and found cherubs on the internet. Their website helped me understand what CDH was and how serious CDH can be for babies. I was scared to death but found lots of families through their organization to help support me and give me hope. Cherubs sent me a tote bag with all kinds of information of CDH before I had Natalie. My husband and I called it the gold bag because it had all the information we needed to understand our daughter's health condition. Natalie had a hard first few month of life in the NICU but it now a happy 16 month old baby. Thank you Cherubs for everything you all have done for our family!!!

1

Client Served

Rating: 5

CHERUBS truly has become apart of my family. After learning the diagnosis that my daughter would be born with CDH 10 years ago CHERUBS is the first site I found that had so much information and support to offer. Even after her death I continue to be amazed and inspired by so many families working together to support one another with the president of CHERUBS, Dawn, leading the way. Without her tireless efforts so many families would not receive the support they so desperately need.

Review from Guidestar

1 Gillian M.

Client Served

Rating: 5

When our daughter was diagnosed with CDH we had no idea what it really was and how many other babies and families were affected by it. We received a box with gifts information and encouragement from parents who had been through it before. So much is accomplished by this organization with the few people and few resources at its disposal. Knowing that our baby girl is a cherub and that she is in good company and bringing together so many familes is more than I ever thought would happen when we heard about this condition.

Review from Guidestar