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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

233 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.

Mandy A.1

Volunteer

Rating: 5

Our daughter was diagnosed with CDH at Birth. Cherubs gave us a community and support to understand her diagnosis. They have given us a place to ask questions, to meet other families, and a chance to meet survivors and give us hope. After the cherubs conference in 2017 I decided I wanted to help and volunteer. I just wanted people to know that there is a community out there who understands what they are going through, and to help give those families hope.

Melanie Jensen H.

Volunteer

Rating: 5

We have been involved with Cherubs since after our second daughter died from CDH. Our first 2 children, both girls, past away from this deadly birth defect. We didn’t know about Cherubs until after our second passed away. We are incredibly grateful for them. It was so helpful knowing that others have gone through the same trial. Cherubs has introduced us to many families around the world. My husband and I have been have very involved in Cherubs and adore meeting new family’s. We try not to let our missfourtine destroy our lives. We try to uplift others and cheer them on through the tough times. Cherubs has helped us so much that we want to inspire others to be Cherubs members to support and lift them up.

Cheryl S.

Client Served

Rating: 5

My son was born 13 years ago with CDH! We found out two days before he was born and they sent us to UNC immediately where we were told he most likely would never take his first breath! Well he did take his first breath and spent 4 months in the NICU as well as a year at home on oxygen. During this time we scoured the internet for information and found Cherubs! Dawn was amazing and it was like she was holding our hand every step of this journey we have been on. Even at 13 almost 14 it has been a long and arduous journey. Sometimes Brandon still gets very sick but he has defied many of the odds. He plays saxophone in the band and is a happy relatively healthy normal kid! It would have been extremely hard to do this on our own, but having an organization like Cherubs that understands and helps you to navigate the whole process has been a godsend! For that Dawn and Cherubs will always have a special place in my family’s heart!,,,

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1

Volunteer

Rating: 5

My son was born December 17, 2004. We found out two days before his birth that he had a condition known as a Congenital Diaphragmatic Hernia or (CDH). He was only given a fifty percent chance of survival, and that was only in the event thathe was able to take his first breath after birth. We were fortunate to be transferred to UNC Childrens Hospital and the staff tried to assist us with our son and this condition.

Once Brandon was born, we scoured the internet for any information that we could find. The only information out there at that time were case studies and this site that we found called Cherubs. They gave us vital information and was the only venue we could find that gave us a glimmer of hope. Since Brandons birth they have reached out to us and many families who have be devestated by this horrible birth defect.

I cannot say enough good things about all the great work that Dawn and all the volunteers do for these babies and families. They have devoted their life to ANYONE world wide who has a child, or family member born with this. Not only do they offer hope and emotional support to those families, but they reach out to those who have lost a child to this condition. They fight to to give these babies a voice, and they are driven to find a cause so that no other baby might be born with this.

I cannot speak strongly enough about how my family feels about Dawn and CHERUBS. Thank you just doesn't say enough for all that they did and do for so many families including ours.

Renci S.

General Member of the Public

Rating: 5

My Lcdh baby girl, Lyric Reign, will be 2 years old in Nov. She spent 5 months in the Nicu, a year and a half on oxygen support even at home, and going from 10+ specialist down to maybe 1! She is truly a miracle and if it wasn't for CHERUBS I would've never been educated on CDH and receiving their support helped me fight this journey with my baby girl. ❤

Bobbi T.

General Member of the Public

Rating: 5

The emotional support and world wide family that’s been created has been the utmost importance to our family. To know that we’re not doing this journey alone. To be brought together with others. To know that there’s research being done to support families. To try and save the babies.

Client Served

Rating: 5

When we learned that our son was going to be born with CDH, this was the only helpful resource available. In the years since, we've become helpers and supporters. They've been awesome!

McKayla Chaylyn A.

Client Served

Rating: 5

My daughter was born with left sided CDH, she is now 7 years old & since the time of her diagnosis, my 5 month ultrasound, we have been involved with this non profit, more so over the years as it has grown. It is so nice to be able to connect with other families & know we are not alone. Having their support has made a world of difference to our daughter & us!

kingmomof3

Client Served

Rating: 5

CDHi has been there for us through the years. The support is fantastic, and you always know that there is someone who has been in your shoes.

Previous Stories
2

Client Served

Rating: 5

My daughter was born with CDH 13 years ago. We are blessed to have a survivor! CHERUBS has always been a great support. Our local rep is always ready with a word of encouragement and we've even met with her a few times. My daughter did a service project for CHERUBS and went to meet Dawn. There has been nothing but help and gratitude from CHERUBS! I am so glad that I found this wonderful non-profit, and volunteers. We have met many wonderful families through CHERUBS. Thank you CHERUBS for all that you do!!!

Lauren122

Client Served

Rating: 5

Both my daughter and I were born with CDH. CDHi is so important to our family because more funding for research is greatly needed. I don’t want a 3rd generation of our family to be effected with this devastating birth defect.

Previous Stories

General Member of the Public

Rating: 5

CHERUBS has been a wonderful support for my family after my daughter received her CDH diagnosis. They provide opportunities to connect with other families, provide information and resources and prayers.

Brenda121

Client Served

Rating: 5

One of the neonatologists told us about Cherubs after our son was diagnosed in utero. It was been a great resource not only with information but community. It is wonderful to meet other people whose children have had a similar diagnosis.

Previous Stories
1

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.

Shayla Marie A.

General Member of the Public

Rating: 5

My son was born with lcdh, thanks to organizations like this, my son is here and not terminated inutero like originally encouraged! ❤️

Josh N Taylor M.

Client Served

Rating: 5

Our LCDH survivor is 3 now. Cherubs helped so much after finding out that our son would be born with CDH. There is so much compassion and understanding from them, they made me feel not so lonely and that there was hope.

General Member of the Public

Rating: 5

I am in a relationship with Morgan Nuchols who is a CDH long term survivor. I also encourage and sympathize with patients and their families online. I am a PH patient and understand from a patient view. The Association of Congenital Diaphragmatic Hernia Research is a very helpful and needed nonprofit to the CDH community.

AmandaP

Volunteer

Rating: 5

Thanks to Cherubs my daughter has met other CDH children and we have made many new friends. Cherubs has helped us find families with similar experiences for support. Most importantly Cherubs has given me hope that my daughter will always have a place to turn as she navigates CDH as an adult.

Previous Stories

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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Morgancdhph23

General Member of the Public

Rating: 5

Grew up with severe left CDH and first found CDH cherubs before my 23rd bday I’m almost 25 now. Been helping families that mention or tag me about PH with CDH since i grew up with the two. And now stable PH for year and half so far. Final 4th CDH repair was 11 years ago and finished July 26th 2008 on my 15th bday almost a decade ago!

Previous Stories
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!!!

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.

Previous Stories
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.

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.

Previous Stories
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.