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CHERUBS - The Association of Congenital Diaphragmatic Hernia Research

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Nonprofit Overview

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

Mission: Our only mission at CHERUBS 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. 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 4400 CDH families.

Results: CHERUBS 2012 Milestones and Accomplishments: * $20,000 in CDH Research Grants awarded * New Executive Board of Directors * New Parent Advisory Board * New Medical Advisory Board * New Vice-President, Ashley Barry * New Secretary, Lauren Campbell * New Treasurer, Kelly Green-Krist * Senate Bill S.3396 Introduced * Parade of Cherubs on April 19th in Washington DC to Capitol Hill * Members met with the offices of over 25 Senators * April 19th CDH Day of Awareness * Parades of Cherubs on April 19th in Chicago, Seattle, Portland, Denver, St. Louis, Peoria * UK Light up The Night on April 19th * First ever Virtual CDH Awareness Parade on April 19th * 2012 CDH Conference in San Francisco * New CHERUBS Web Site * New Facebook Forums Application created * $10,000 CDH Research Grant awarded to CHOP on December 30th (by votes) * Another $10,000 CDH Research Grant awarded to DHREAMS on December 30th * First ever Facebook Grant Contest held by a CDH charity * Over 300 care packages sent to families through our CDH HOPE Totebag project * CDH families represented at the American Pediatric Surgical Association conference * Our 2012 National Children's Memorial Day tribute honored the memories over 1000 cherubs * Texas Get-Together * Ohio Picnic * UK Get-Together in Scotland * Chicago CDH Carnival * Pennsylvania / NJ / Delaware Picnic * Denver Picnic * Indiana Get-Together * Washington Zoo Trip * Oregon members met with Senators * Oregon members represent CDH families at the opening of Randall Children's Hospital * Over 900 raffle tickets sold for the 50/50 CDH Research Raffle raising $9000 for Research * Over 10,000 Facebook Fans reached * Over 10,000 signatures reached on CDH Research Bill petition * Over 18,000 people reached in one post on Facebook * 2012 Silver Lining Newsletter Published * 2012 CDH Awareness Video * Day of 2012 CDH Awareness Video * Participated in televised Raleigh Christmas Parade * CHERUBS members in Claremont, NC Christmas Parade * CHERUBS members in Snoqualmie Days Parade * It's a Knock-Out UK Fundraiser * Masquerading Angels Ball * UK Formal Ball * CDH Awareness Calendar featuring over 1300 CDH patients * Save the Cherubs CDH Awareness Calendar * First CDH Awareness Calendar in the United Kingdom * Won Shane Co. charity contest * Won the JuJuBelle Facebook contest * Our CDH Awareness Ribbon included in St. Louis Cardinals Game to raise money for St. Louis hospital * Washington Mud Run Fundraiser * Enter Stage Left Fundraiser * UK Fishing Competition Fundraiser * Rockin' for Aidan Fundraiser * CHERUBS joins Google+, Chirpify, Pinterest, Instagram * CDH Fundraising Kits created * Cooking With Cherubs cookbook project begun * Participated in the San Francisco, Boston and Baltimore Marathons

Target demographics: families of babies born with Congenital Diaphragmatic Hernia

Geographic areas served: International

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Community Stories

218 Stories from Volunteers, Donors & Supporters

14

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.

Heidi30

Client Served

Rating: 5

Tanina was born during an ice storm in 1995. With 22 years now behind us, there are still so many questions to be asked and answered about CDH. CHERUBS was the first to help parents, those children and their doctors find answers. Giving support to both grieving and survivor parents, holding conferences at low costs and just being there when no one else could be.....thank you for your honest, warm approach, your never ending work, your kindness, your friendship. You amaze me and I am forever grateful.

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2

Client Served

Rating: 5

My daughter, Tanina, was born in 1995 with CDH. She was given a 5% chance of life with multiple issues. At this time, I turned to books or research. I could find nothing on CDH. Nothing is scary.... not knowing what you are dealing with is worse than the CDH itself. Finally, Jay Wilson, Tanina's surgeon, mentioned that a group was starting up to better understand and advocate for families who have dealt with this birth defect. I became a life long member of CHERUBS. They have worked with thousands of families and worked with conferences and medical staff...all in the name of find out what CDH is. While we still may not have an answer, wwe have a core base of people dedicated to finding an answer, helping those afflicted and giving hope to all. Tanina graduated from St. Paul's School in Concord, NH. She is a softball pitcher and plays a concert flute as well as sings as the head of her section in the choir. She will attend Lafayette College this fall as a neuroscience major. Well done, my child. Thank you for your support, CHERUBS!

1 Paula102

General Member of the Public

Rating: 5

Dawn is amazing. After losing my son I did not really even want to be here. This group along with supporters and still living for my son are the only reasons I am here. They are my angel and a blessing for all of our CDH babies and their families. Dawn works with a vengeance to raise awareness and pass new bills for our babies. Dawn knows no boundaries when it comes to compassion and love.


JEREMYS SONG

On St. Patricks day of 2003 a precious little gift was born at 1 am on a Monday morning. No one knew that Jeremy had Congenital Diaphragmatic Hernia. When Jeremy was in the first few seconds of of life he suffered a heart attack, stroke, and his lungs collapsed. They flew him straight to ACH. Once there on ECMO(Life Support) Jeremy had a chance Most CDH is on the left so they do not make it, it smothers the heart. Jeremy’s was central so his liver blocked a lot of it. All of his organs were inverted (Backwards).By the second day he had four major operations. Jeremy had chest tubes, tubes in his little nose, mouth, wrist, feet, naval, and groin for one month. Once in NICU and Jeremy had to have his last five surgeries. Then we were on our way home. I believe I died 10 times while we were in there, But God gave me such a precious . We went home on four machines, three blood pressure meds, seizure meds, potassium. Jeremy thrived……………………… He loved to hear his siblings play. Jeremy loved going to Sea world with NawNaw and PawPaw and dancing with the count. Jeremy loved going to Dallas Aquarium with Mom and Mr. Ray and meeting spongebob. Jeremy loved every moment with his therapist Ms. Donna, Mrs. Virginia, Mrs. Gretchen. He loved all of his ladies, especially Mrs. Linda Walker, Jeremy was her “Bubbagump”. Jeremy adored his little brother CJ, there was never a more loyal love. He loved his sister playing the guitar everyday! There was never just a Dr. appt with Jeremy, it was an adventure! He never knew a stranger, he genuinely loved anyone he cam e in contact with. And for a brief moment in time he would change their life forever. There was no purer soul. He touched their mind with his inspirational soul and made every trip a wondrous joy. He loved his friends and teachers at school and adored his brothers and sisters. Kingsland elementary help make a structured loving environment for my son. They loved him for the Angel he was and is. Jeremy was everybodys buddy. His cousin Vicki was his very best friend. The love between the two was beyond our time. And his best buddy Shawn, who will always be a part of his heart and family forever. Form his PT/OT/ST to the Superintendant Mr. Johnson. However, Jenkins was our 2nd home. From the age of three months on they were my savior. The things pushing they challenged him with really got Jeremy to where he could go to kingsland, they and God got him to me and his family. Is so thankful for the love this town showed to my precious gift. We had done so much for this preceious little man and had so many more plans. Before every procedure Jeremy always gave a thumbs up to lot me know he would be fiend. This last ambulance ride he gave me thumbs up. There are no known causes for CDH. CDC is still researching. That is why Cherubs is so critical. They can do so much so other families so they don’t go through what my family and I went through. The Lord took his highest Angel on high that night. And left his shell of a Mom, empty. I am empty unless I am still doing for my son,Jeremy Tristan-Lee Tribble. 03/07/03/-03/13/16. His plaque will go up at Jenkins in Pine Bluff and he will have a plaque up at kingsland elementary. In his eternal loving memory. This little man is a legend. Faced his own war’s with a smile. Always a thumbs up, thumbs up. Faced over 15 surgeries in his little lifetime, a true legend.

AmandaP

Volunteer

Rating: 5

Cherubs has been a great support for my family since I joined 6 years ago. We had support through 3 surgeries my Cherub had and lots of ups and downs. We have been fortunate enough to meet 15 other CDH families because of Cherubs!!! I now volunteer because Cherubs is such an important organization to me.

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Volunteer

Rating: 5

Cherubs helps families all around the world. CDH is a birth defect that is so unknown families have to search for information. Cherubs provides a safe, knowledgeable and caring environment for families to share their experiences and support each other. Cherubs does so much with so little funding. Every year my CDH'er does a walk to raise funds to donate to Cherubs for CDH research. I am proud to be a volunteer for Cherubs!

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1 Gail H.

General Member of the Public

Rating: 5

I am the Mother of a CDH survivor who will be 34 this year. I have been fortunate enough to know CHERUBS through Face Book. I have met some amazing people, shared stories, tears, support and prayers with those who have been touched by CDH. I wish CHERUBS would have been in existence when my son was born. We were given very little information about CDH back in 1983, and as a new Mom, I felt very alone. Dawn Williamson has been a God send to each and every member of this group. She, with the help of her volunteers works tirelessly to aid families touched by CDH, provide a safe place to share worries, give families the information needed as they travel this journey and allow people to access information and awareness where CDH is concerned. I feel blessed and honored to be a part of this wonderful CDH family.

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2

General Member of the Public

Rating: 5

I have to say, that although my son is a survivor of CDH (almost 28 years now) I have been blessed to have been able to connect with Dawn Williamson and so many wonderful, caring,m giving people through CHERUBS. Back then, we were given very little details about CDH..we were only told it was life threatening and that my son would spend quite a while in the NICU. After all of these years, I have found out so much information about CDH, I feel more empowered to move forward and teach others about it, make them aware of it and do my best to try to get funds to bring research for CDH, so that, maybe, in my lifetime..it will no longer be a potential death sentence for babies. I am so grateful for this organization and for the people running it, the people who have joined it and for giving me a place to connect and learn. I hope someday to "pay it forward"..to help others the way they have helped me.

Review from Guidestar

1 Denise170

Professional with expertise in this field

Rating: 5

I am a NICU nurse and I go to the SDU for deliveries of CDH, I also follow them thru out their hospital stay, because I am on the Surgical team. To see a organization that help parents have support beyond the hospital and that understandi life after having CHD enter into their lives. Priceless memories about courageous people ❤

1 Rhonda47

Client Served

Rating: 5

December 29, 1992 my son Preston was born with CDH. Jan 1993 I met a couple in the waiting room with their son, Shane, also a CDH newborn. We shared many triumphs and disappointments together. We also shared the inability to research or find any answers of our own. Just a paragraph or two in a very large book written in a way very hard to understand. When my son Preston passed, I had no answers or understanding or support from others. Because of Dawn and her heart for others to be informed, supported and not be alone, Cherubs came to be. I have been there since the birth of this charity. I have seen the heart behind its growth and love. The ups and downs, the fighting for each and every cdh family. Cherubs is what true charities are and should be about. Dawn Ireland has displayed the most incredible dedication I have ever seen in anyone. Cherubs, our sons lives, will live on past our own. Helping others to live their's.

2

Volunteer

Rating: 5

I'm 23 1/2 year old severe left CDH survivor, also got PH ( Pulmonary Hypertension) from CDH. I found Cherubs around my 23rd bday, since then I've learned more and helping many family's that mention PH with there little CDH baby if they survived or soon after passed from the two. Become as roll model oldest patient with combo of CDH and PH which is not common at all. 1 out of 4 in family, 3 healthy siblings. There needs to be more awareness and word about Congenital Diaphragmatic Hernia around the world research to find a cure!!!

1

Volunteer

Rating: 5

When Dawn's (Cherubs' CEO and founder) baby Shane was born with CDH over 20 years, there was no outside support and very little information available to her about this critical condition. She promised herself that she would do everything in her power to never allow any other CDH parent to be alone and without support. Unfortunately Shane passed away at age 6. Shane was and is Dawn's only child. Dawn has devoted her life to help CDH babies by offering support, information, monetary support (limited because of funding) and most of all doing everything in her power to raise funds and awareness for a cure/prevention of CDH through research. Most of these years Dawn operated on a shoestring budget and without pay. Because of her hard work and compassion, Cherubs has grown to several thousand members. Dawn is totally hands on ... tirelessly working in the trenches, lobbying congress for CDH research funding. I have been a member/volunteer for over 20 years, so I have seen Dawn's dedication and Cherubs' growth firsthand. Dawn has some very devoted volunteers that have done an amazing job. To name a few-- Josh, Tracy, Felicia, Ashley and Nicolle among many others.

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1

Volunteer

Rating: 5

Thank you Cherubs for all the support you have given to 1,000's of CDH families. The President, Dawn's, cherub Shane passed away a long time ago. Dawn has carried on his legacy in hopes to help research find a way to prevent this terrible birth defect from happening to others.

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1 Lizz L.

Volunteer

Rating: 5

As a CDH survivor, I went the first 36 years of my life thinking I was an anomaly. Then I found CHERUBS. Now, eight years later I have met other survivors and grieving families who have become like family to me. Some of my best friends now are ones I met through CHERUBS. Now, at a volunteer, I have the chance to give back and give hope.

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2

Volunteer

Rating: 5

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.

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1 Jamie R.

Client Served

Rating: 5

I found CHERUBS shortly after my son passed away from CDH. The love, compassion, understanding, and honest desire to help is apparent from the get go.

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2

Volunteer

Rating: 5

After losing my son to CDH, CHERUBS had been there in every way possible to love, support and educate me.

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1

Client Served

Rating: 5

My daughter was diagnosed with a left-sided hernia while I was still pregnant with her. I had 15 weeks to research and find out everything I needed to know. CHERUBS had the most easy to understand information and support group. 7 years later and I am still in awe of this group of people and their commitment to CHERUBS!

1 Stephanie100

Client Served

Rating: 5

This charity has helped me understand more of what I go through and let me feel like part of a family that will support you through anything. I was born with cdh 28 years ago and never knew what was wrong with me or how to take care of my health.

Previous Stories
2

Volunteer

Rating: 5

When I found out about CHERUBS a year ago I thought it was so amazing that people are helping families know what they are about to go through and give support! This meant a lot since my family didn't have anyone when I was born with it 24 years ago. Everyone at the CHERUBS is amazing and helpful and reall knows what you are going through so you know you are not alone.

1

Client Served

Rating: 5

My son was born in 2004 with a left sided CDH! Cherubs was the only place we could find any information regarding our situation! The support during that time and even for years after helped us through the toughest time of our lives.

1 Brenda121

Client Served

Rating: 5

I first heard about Cherubs when my son was diagnosed in utero with CDH 14 years ago. I was so glad to learn that I wasn't alone on this journey. I have received wonderful support and made friendships through this group.

Shereen K.

Client Served

Rating: 5

My CDH survivor Micaela is 19 years old now. We didn't find Cherubs until about 5 years ago. Back then, we weren't given the information from the hospital about it. I felt alone in the CDH journey. It would have made all the difference in the world to have the support we receive now from Cherubs back then as a young family. We will forever be dedicated to lending a hand in any way we can to help the new families beginning their journeys with the CDH monster.

Volunteer

Rating: 5

I am a CDH mom and I volunteer for CHERUBS. I am proud of the work being done at CHERUBS and the transparency of the charity. I know that I am helping people through their journey because others helped me through ours. Thank you CHERUBS for being such a great charity.

Donor

Rating: 5

My son is a 22 yr old RCDH survivor, ECMO x 2 and we were like Dawn in the very beginning not having a place to go for information. I have supported Dawn's efforts since she began.
Please keep up the good work! She is amazing!!!

Client Served

Rating: 5

Wonderful nonprofit charity. They were extremely helpful in supporting affected family and creating awareness!!

Sara Y.

Volunteer

Rating: 5

We love the cherubs!! They have help my family out in so many ways when I found out my daughter would be born with CDH

Debbie197

Client Served

Rating: 5

Our LCDH survivor is 2 now. Cherubs helped so much. Finding support and information in a time of fear was such a blessing.