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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

Programs: var sc_project=9167094; var sc_invisible=1; var sc_security="4a5f7dad"; var scJsHost = (("https:" == document.location.protocol) ? "https://secure." : "http://www."); document.write("");

Community Stories

39 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.

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

General Member of the Public

Rating: 5

CHERUBS has been a blessing to our 19 month old LCDH and ECMO survivor!

1

General Member of the Public

Rating: 5

My daughter was born with LCDH. This organization helped us in many ways before she was born, and when she passed. Thank you all for what you do. Your hard word doesn't go unseen!

Lisa540

General Member of the Public

Rating: 5

When our son was first diagnosed with CDH in 2002 the Cherubs organization provided us with support and education. We are grateful for all that they do to spread the word about CDH. Providing a way to connect families has also been a blessing.

1 Holly82

General Member of the Public

Rating: 5

I've not had a personal experience but I have a friend who's had to go through this. It's mentally exhausting and so scary for them. I believe this needs to be better known.

General Member of the Public

Rating: 5

CHERUBS has helped our family find out more about CDH when there was hardly any information online about it. Our son was born 10 years ago with CDH. We continue to support CHERUBS and network with other CDH families through them.

Lauren122

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.

General Member of the Public

Rating: 5

This is our sweet baby Christian. He survived 40 days in the NICU at Children's Hospital in Dallas. He is our Angel and there is not a day that goes by that I do not miss him. ❤

2

General Member of the Public

Rating: 5

A few years ago 3 little boys were beyond excited to welcome a little sister! "Our FIRST sister!" they happily exclaimed to anyone who'd listen. The day finally arrived and they anxiously awaited pictures of their "finally a girl". She was born a robust 8.6 lbs and 21" long, yet, layed on my belly
purple,
still,
SILENT.
The silence was suffocating.
I was frozen with terror and could only repeat, "She isn't crying. She isn't crying." Thankfully nurses were able to get her responding. We knew something was off, but the nurse blew off all of our expressed concerns. We went home KNOWING something was wrong. A mere 13 days later we landed in the ER with our first baby girl in desperate trouble. Her oxygen had been at 80% for the first 13 days of her life, we'd found her not breathing several times each night, and she turned purple every time she cried. We heard the words Congenital Diaphragmatic Hernia for the first time in our lives. Words like she's stable at the moment, and emergency surgery were being flung at us faster than we could process.
It was harrowing!!
We were stunned to numbness, yet, wildly terrified all at once. We had no idea the long term implications to such a diagnosis. We were later discharged with NO warnings or long term information regarding a Diaphragmatic Hernia survivor. We muddled along for nearly 2 years with NO idea what was typical versus cause for concern.
We were alone.
It was a terrible way to try and provide what your baby needs. Then, one day, I stumbled across CHERUBS and found an entire community navigating the same path we were on. We were no longer alone. We had hope. We found wisdom. We found support from those who really get it. We found a second home! We're forever grateful for this amazing group of dedicated people.

Review from Guidestar

2 Alma G.

General Member of the Public

Rating: 5

I became a member of cherubs a few months ago, I love the support and love you receive from everyone in this page, reading other families journeys and knowing that your not alone in this difficult road is a true blessing!!

Review from Guidestar

1 Patricia108

General Member of the Public

Rating: 5

I love CHERUBS. My daughter has CDH and when I found out I was pregnant I immediately started the research. I really had to look no farther than CHERUBS. They sent me my tote and in it was all about what I was getting ready to go through what to expect. I am also part of the forums and this organization has become my new found family. Anytime I have had a question or needed advise, or even just someone to talk to CHERUBS has been there. I do not like CDH but I can say that out of a terrible defect I and my daughter Moriah have gained a new family. This family loves, supports but above all understands what I am going through as a parent and what she will go through as a survivor. Moriah will always be fighting CDH but at least with CHERUBS she will not be fighting alone. GO TEAM MORIAH! GO TEAM CDH! GO TEAM CHERUBS!!!!! Thank you all so much for everything. Our love always, Patricia and Moriah

Review from Guidestar

1 April48

General Member of the Public

Rating: 5

My daughter was born with LCDH. I wish I would have found the support then I see now on cherubs. They are amazing! Always bringing awareness and supporting all the family's with positive messages.

Review from Guidestar

2 Elizabeth106

General Member of the Public

Rating: 5

Breath of Hope and Cherubs were both there for me when I was pregnant with our daughter. I tell everyone to go to them and Global CDH for support along with other groups on Facebook. The best way to get through a CDH pregnancy is support! The more the better!

2 Jenna12

General Member of the Public

Rating: 5

When our first daughter Chloe was diagnosed with CDH in utero at our 20 week scan, we felt lost and alone. We had no idea what CDH was, didn't know a soul who had been affected by CDH. Through the wonders of google search I found Cherubs, and boy am I glad I did.

Dawn, Cherubs founder, has been a huge support for us ever since. She supported us through our pregnancy, delivery, through losing out previous daughter and she has continued to do so ever since. We since established our own foundation which she has supported and so for any body to believe Cherubs is the only charity she supports is rediculous. In my opinion, without Cherubs there would have been no support for us, Cherubs started it all and continues to do an amazing job.

Through Cherubs I have met lots of wonderful people (many I now consider to be good friends) who have been affected by CDH. I love Cherubs, Dawn and Cherubs will always hold a special place in my heart.

1

General Member of the Public

Rating: 4

In 2006 we had a baby boy born undiagnosed with LCDH, I had never heard of it and felt so very alone. My son Jordan passed away after 21 days on ECMO, I found CHERUBS after doing some online searching and it was a life saver. I had another son in 2007 also born with LCDH, Caleb and he too was not meant for this earth, I received so much support even if it was just over the internet. I was so broken after having one, but two? I must be the only one? No, I have found that there are many families that went through the same heartache that my family and I have. I would not have made so many friends, so many "partners in pain" if it was not for CHERUBS. I am saddened by the reviews that state how they feel about Dawn, I have never had any run ins with her and if I did it would not change the way I feel about CHERUBS. It is not called "DAWN" for a reason! CHERUBS is an organization that is made up of families of survivers and non, of researchers, volunteers and just amazing people who want to bring about awareness! So my review on CHERUBS is that if you have ever been through this horrible heartbreak or you know someone who has, or you just want to bring awareness to CDH then this is a wonderful group to be a part of. Please I ask one thing, I have pictures of my sons on CHERUBS and they do wonderful things in my sons memory...if you have a problem with Dawn take it elsewhere, please don't slander this Organization that has done so many wonderful things for CDH families

9 Aubin B.

General Member of the Public

Rating: 1

My son was born with CDH in 2011. Our hospital gave us information on both CHERUBS and Breath Of Hope. I never once felt like I got support from CHERUBS. When I started a page for my son Dawn started bashing me. I felt it was petty and self serving on her part. My goal at the time had been to spread awareness and give emotional support to other families affected by CDH. After her childish behavior, I with drew from CHERUBS and no longer would post about them or tell my friends and family to donate to them. I felt it better that way. A year later Dawn started bashing me again. She bashed my CDH awareness page and my personal Boutique because of their logos and names. She told everyone on CHERUBS facebook page that I was trying to profit off CHERUBS name. I couldn't believe how childish she was being. She out right attacked me. Dawn condemns all other CDH organizations that are not attacked to CHERUBS. She condemns those who use a cherub as their logo or the word cherub in any form. Never have any of my logo's looked ANYTHING like theirs, I wouldn't want anyone to mistake anything I do as associated with CHERUBS, an "non-profit" with a president who attack you if your not with her. The board of directors needs to monitor their president more. Its public record that she doesn't follow guidelines in following the proper paperwork. Who wants to support a charity where the president pays herself more than she donates to Research or families. Go to Guidestar.org and you can view CHERUBS IRS paperwork for yourself. And in researching I came along this little blog http://deceitfulnessofcherubs.blogspot.com/search/label/Dawn%20Williamson Shame on you Dawn for attacking people. Just because you don't have good intentions doesn't mean you have to try and discredit those who actually try to make a difference.

**I am NOT a chapter president. Paperwork for becoming a chapter president hasn't even been filed. Officially I am just a general member of BOH and supporter of their work. If Dawn bothered to do her homework she would be able to tell via IRS and the state of CA that there is no CA chapter as of yet. I fully support BOH. They are mature about their workings and don't try and conceal the true fact about their charity. They are there for parents who need them, like me, when no one else is.

Comments ( 1 )

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CHERUBS 08/01/2013

Dear Chapter President of Breath of Hope,

Thank you for your comments, but we respectfully disagree with the entirety of your review. Please forward any proof of any public or private bashing of you, your charity, your personal business or your name to cpab@cherubs-cdh.org because we are unable to find one ounce of proof of your accusations. As a charity which has invested 18 years in our name and logo, we simply pointed out that any "cherub" items to do with CDH would not be official to our charity unless through our sites. Your company and name were not mentioned. Yet you have repeatedly posted publicly professional and public attacks on our charity and Dawn. Such behavior is not professional and in no way helps the CDH community.

We do appreciate you taking the time to go out of your way to post on our charity's Great NonProfits page.

Our Board members have been notified of your latest public accusations and our lawyer, Lauren Campbell, or our CHERUBS Parent Advisory Board would be happy to speak with you regarding your questions, concerns and other issues. You can reach them at cpab@cherubs-cdh.org

As always, thank you for being professional and working towards a positive, productive CDH Community.

Sincerely, Dawn Williamson, CHERUBS President and Founder var sc_project=9167094; var sc_invisible=1; var sc_security="4a5f7dad"; var scJsHost = (("https:" == document.location.protocol) ? "https://secure." : "http://www."); document.write("");

5 cdhmama93

General Member of the Public

Rating: 1

When I found out my son was going to be born with CDH and I looked it up I also found this organization. I tried to apply for their forums and had to wait nearly a whole month to be accepted. then when I was trying to get cnn to do a story on CDH and use my son they tried to take over the comments for their own thing and never got anywhere. Then Dawn kept saying my mother-n-law was my sons mom after I told her I was his mom 3 times. I didnt really feel support. They also like to attack all other organizations when really they need to realize that its not about their selfish wants ITS ABOUT THE BABIES!!! They kick people out and get mad if people have fundraisers and dont give the money to CHERUBS.

Comments ( 1 )

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CHERUBS 07/29/2013

We are sorry that you had trouble with the forums and yes, you were called by the wrong name but were apologized to and I am sincerely sorry. It was an honest mistake, not one meant to hurt you or make you feel unwelcome. I am human and make mistakes.

We tried to help promote your CNN post and fully supported you in your quest to raise awareness. When you misunderstood our support and got offended, we backed off so to not upset you.

Please question where you hear false rumors and gossip and what others have to gain by telling you such things. Because it is simply not true. There is no attacking from our end... please show us what you mean as that is not how our charity operates. You will not find anything on or off-line that our charity is involved in attacking anyone or anything. We have a record of standing up against those who do. Quite honestly, we don't even have time for such behavior. If you have seen our activities, we are extremely busy doing good for CDH families with a multitude of projects. All of our time is spent providing services for CDH support, research and awareness and that is proven by all the accomplishments that we are steadily achieving. There is just not enough hours in the day for any type of negativity or silliness.

Our charity works with any person and other charity who wants to help CDH families in a positive, productive, non-competitive environment and this has been proven in our work for 18 years, membership in ACDHO and helping several other charities to get started. There can never be enough support or awareness or funding for these children no matter who is doing it.

We wish you all the best in the world. If there is anything we can do for you or if you have any further questions or concerns please do not hesitate CHERUBS Parent Advisory Board at cpab@cherubs-cdh.org

5

General Member of the Public

Rating: 5

We lost my grandson to congenital diaphragmatic hernia last week. I am on the board of a trust that will be making a donation to your foundation. I am very impressed with your work and professionalism and wish you continued success.

Comments ( 1 )

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CHERUBS 07/29/2013

Thank you very much for your kind words. If there is anything at all that our charity can do for your family, please do not hesitate to contact me directly.

Dawn Williamson, President & Founder

919-610-0129, dawn.williamson@cdhsupport.org

5

General Member of the Public

Rating: 1

How come this organization does not transmit to everyone how much its president takes out of the organization in monetary terms. In 2010 she took $4500.00 in wages or COMPENSATION as it is on the IRS form in 2011 she took $35,000 IN COMPENSATION yet when expenses for 2011 are put on its facebook page ther is NO mention of her $35,000 payment to her and in fact the figures quoted on the facebook donnot corespond with the IRS form.Why is that is she ASHAMED she is taking so much out if not she should be

Review from Guidestar