Wednesday, October 28, 2009

What People Are Saying About CHERUBS - we're requesting quotes for our new site



Each page of our new site will include 2 things that we need help to collect from CDH parents:

1. Photos of cherubs dressed as cherubs (wings, halo)
2. Quotes from members about how CHERUBS has helped you.

We will also be using these photos and quotes in awareness campaigns. You can submit yours to dawn.williamson@cdhsupport.org



Below are some quotes we've received.....


"I have found so much support, love, and many friends. I will be forever greatful to everyone at CHERUBS for helping me through the death of my daughter. Words could never describe the love I have in my heart for this organization." - Kate Crawford, mom of Shannon Crawford (1/16/07-1/19/07)

"CHERUBS is a place CDH families can go and talk about the many issues we deal with on a daily basis. It is an extended family--that offers love, support and strength. No matter how CDH has affected each individual member. We are a united family and CHERUBS gives you the peace in your heart to know you are not alone on this CDH journey. You have members all around the world that understand CDH. We are all in this together. Knowing I have members who can help me with each step we take with our daughter Shelby. Makes this journey easier." - Stephanie Olivarez, mom of Shelby Olivarez (7/10/06)

"
My only wish is that I had found CHERUBS earlier. My son wasnt diagnosed until birth with CDH and after months of struggles I found CHERUBS and joined their family! Yes, it is a family, although each CHERUBS' journey is different, we all have the common bond of the helpless feelings and receive unconditional love and support from one another. THANK GOD FOR CHERUBS!" - Penny Campsey, mom of Cole Campsey (3/26/03)

"
My sister found CHERUBS for me right after Faith was diagnosed. I don't know what I would have done without all the love and support from these families around the world. Truly a community of courage, strength, love and understanding." - Amy Miles, mom of Faith Grace Miles (3/6/08-4/5/08)

"No one knows what this experience is like except someone who has really been there, and CHERUBS if just that- People all around the world who have seen the things we have, and felt the way we have, had to make the same decisions that we have. We all share the same goal now. Whether our children survived or not, we all want to see a day when there are more answers and more options." - Sarah Deskins, mom to Jeremiah Deskins (9/21/2007-1/12/2008)

"CHERUBS is important because of the awarness for research. I want to know WHY it was for our babies. Do we not deserve that? Parents with children with cancer or AIDS or Cystic Fybrosis or Spina bifida know what causes it. Parent with children born with CDH don't know why. I don't know why. I know it is not because I live in South Carolina because Shaz lives in Australia. I know it is not because I was 35 when Baer was born because Corin was 23 when Gabe was born. I know it was not because I was married because Tania had a partner in Darryl when Jacob was born. I know it is not because I was having a boy because Stephanie already had three girls when Shelby was born. I know it was not because I worked around chemicals in a engine factory because Amy was a teacher while expecting Faith. I know it was not beacause he was my fourth and I already had 3 perfect healthy children because Shannon was Kate's first and Jeremiah was Sarah's first. I know it was not because I had teenager's at home to help out with a sick baby because Kara had a toddler when she had Adam. I know it was not because it was 2007 and there wereso many pollutants in the air because Dawn had Shane in 1993. I know it was not because I did not have top notch prenatal care because Judi was in the military when Christopher was born. I know that it was not because I am not a christian because Penny prays to God everyday yet Cole was still born with CDH. I know that it is not because I am white because Juan Pablo and Fer are hispanic. I know that it is not because I am overweight because Danielle is and was thin when Alyssa was born. So now I know so many reasons why NOT, yet I and all the other CDH parents are still looking for WHY our babies where born with CHD. Until we have that answer we cannot begin to hope for a solution. This is why I think that CHERUBS is so important." - Lynne Brogdon, mom of Baer Brodgon (12/4/07)

"
Five and a half years ago, during my second pregnancy, my child was diagnosed with a Congenital Diaphragmatic Hernia (CDH). All I was told by my OB was that there was a hole in her diaphragm and that she would need surgery. I went home and searched congenital diaphragmatic hernia and I found CHERUBS. Almost everything I learned about CDH was due to CHERUBS. Through their website and their information packet I recieved in the mail. This information gave me guidance as to what to ask the doctors at and what I need to know about CDH. There also is a need for research. The fact that the medical community does not know what causes CDH shows there is a definite need for more research." - Kim Richards, mom to Olivia Raine Richards (8/31/02-9/19/02)

"CHERUBS is my new family, is the place I can go to cry or share or ask for prayers and there is always someone listening. CHERUBS is a place full of love, support and understanding. In CHERUBS I know I'm not alone and that my friends (because I have found so many wonderful friends) will always care for me and my family." - Fer Arce, mom to Juan Pablo Arce (1/6/07)


"When my son was diagnosed with CDH,during my pregnancy, I thought it was something simple that could be fixed with surgery once he was born. When he died I was so lost and alone, nobody really understood what CDH was even after I explained it over and over to them. Then I found CHERUBS and immediately I felt at home, everyone is there for me whenever I need them and most importantly I know I am not alone on my own journey of CDH, which makes all the difference!" - Kimberly Switzer, mom to Asher Switzer (7/4/07-7/4/07)

"I thought when Colton was first diagnosed it was a one time thing. He's fixed and we were sent on our way. I went to our follow up thinking this is a waste of money. (not that I wouldn't of gone). But then the Dr, came in and said he had bad news. I was so confussed. I immediatly went home a started doing research. And I found my new friends and now I have a better understanding of what is happening. Not all the answers I was looking for. But I do understand it's not my fault. and Thank you for that". - Carrie Crum, mom to Colton Crum (10/11/07)








Prayers & Quotes for October 28, 2009

If you have a prayer request for a cherub or family member of a cherub, you can send it to prayers@cdhsupport.org In addition, if you have a quote that you would like to share, please feel free to send it to prayers@cdhsupport.org too. I know there are a lot of babies, children, and families in need of prayers that I have forgotten or not aware of, so please send in a prayer request for them.

Please keep the following in your thoughts and prayers:

Cherub Anna L. who is recovering from back surgery (scoliosis)
Cherub Jaime T. was is recovering from a major reherniation repair surgery
Newborn cherub Andrew H. is having trouble coming off of ECMO, another trial-off is set for today
Newborn cherub Chase K. is on ECMO for a second time
Sarah D. mom to angel cherub Jeremiah is expecting a baby boy
Cherub Sienna S. has been sick and not eating very well
Newborn cherub Carter A. is working on battling his staph infection and oxygen weaning
Newborn cherub Mia M.’s heart is having complications, back on high flow cannulas, and dealing with acid reflux
Cherub Kyle A. is sick with pneumonia in his left lung
Cherub Dylan J. has reherniated and surgery is set for 12/2
Cherub Alexander H. is off the vent during the day, hoping oxygen levels stay up and his heart rate down
Cherub Justin S., PDA has reopened, still on a vent, and has bad pulmonary hypertension
Newborn cherub Zoe L. and her twin sister Sadie L. – Zoe (CDH) is on CPAP now and Sadie has officially reached the 3lb. mark
Cherubs Isabel H. and mom Elizabeth who are recovering from H1N1
Cherub Connor who is recovering from H1N1
Cherub Tyler who is recovering from H1N1
Cherub Ian M. and his brothers are sick and Ian also needs tooth fairy wishes sent his way to help ease his toothaches
Newborn Cherub Emery who is still in the hospital
Cherub Camden J. who is weaning on vent during the day and reherniation surgery is set for October 30th
Angel cherub McKenna H.’s family is sick with the flu
Cherub Braden H.’s grandmother is returning to work after having heart complications
Angel cherub Leigh H.’s family is dealing with a stage 4 cancer diagnosis


Cherubs On Their Way:

Cherub Kalliope R., mom is on bed rest and Kalliope could arrive at anytime
Cherub baby boy “Sunshine” B. and family, induction date of 11/11
Cherub Lewis M. and family, mom Ingrid has moved closer to hospital to await the arrival of Lewis
Cherub Averi G. and family, that Averi’s heart is okay and mom’s fluid levels come down
Cherub Jaden M., due at the beginning of the new year
Cherub Cora P. is set to arrive this Thursday
All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.


Grieving Families:

Newborn cherub Zoe F. and family, very recently grew her wings
Cherub Ireland B. and mom Chanda – may she feel Ireland’s spirit surround her has she embarks on creating Ireland’s “bling” for NICUs
Cherub Vincent S. and family
Cherub M.J. S. and family
Cherub Rafael E. and family
Cherub Floyd D. and family
Cherub Peter N. and family
To all families affected by CDH and the loss of their precious child, may continued peace and comfort surround them


Today’s Quotes:

“A Journey of a thousand miles must begin with a single step.” – Lao Tsu

“Nothing is predestined: The obstacles of your past can become the gateways that lead to new beginnings.” – Ralph Blum

“Someone remembers, someone cares; your name is whispered in someone’s prayers.” – Author Unknown

“Be of good cheer. Do not think of today’s failures, but of the success that may come tomorrow. You have set yourselves a different task, but you will succeed if you persevere; and you will find joy in overcoming obstacles. Remember, no effort that we make to attain something beautiful is ever lost.” - Helen Keller

Friday, October 23, 2009

Prayers & Quotes for October 23, 2009

Please keep the following in your thoughts and prayers:

Cherub Dylan J. was has reherniated and surgery is set for 12/2
Cherub Breanna and mom Michelle H., for Breanna is in need of state benefits
Cherub Alexander H. is off the vent during the day, hoping oxygen levels stay up and his heart rate down
Cherub Alyssa B. who is sick
Cherub Ruby S. who is working on feeds at home with a bottle and a NG tube
Cherub Isabel and her mom Elizabeth H. who are recovering from H1N1
Cherub Jaime T. who has reherniated and surgery is set for 11/2
Cherub Justin S. whose PDA has reopened, still on a vent, and has bad pulmonary hypertension
Newborn cherub Andrew H. who is on ECMO, next trial-off set for Saturday
Newborn cherub Chase K. who came off ECMO, but had to be put back on for a second time
Newborn cherub Mia M. who is starting feeds
Newborn cherub Carter A., has a lingering staph infection that may be in his heart, bones, or his CDH patch
Newborn cherub Zoe L. and her twin sister Sadie L. – premature and Zoe is battling CDH, both are still in the hospital
Cherub Tyler who has H1N1
Cherub Connor who has H1N1

Cherubs On Their Way:

Baby boy cherub “Sunshine” and family, induction date of 11/11
Cherub Lewis M. and family
Cherub Averi G. and family
All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.

Grieving Families:

Newborn cherub Zoe F. and family, who grew her wings last night
Cherub Jonathan M., his family is moving and prayers for safe travels to their new home
Cherub Ireland B. and family
Cherub Vincent S. and family
Cherub M.J. S. and family
Cherub Rafael E. and family
Cherub Floyd D. and family
Cherub Peter N. and family
To all families affected by CDH and the loss of their precious child, may continued peace and comfort surround them

If you have a prayer request for a cherub or family member of a cherub, you can send it to prayers@cdhsupport.org In addition, if you have a quote that you would like to share, please feel free to send it to prayers@cdhsupport.org too.

Today’s quotes:

“Hope sees the invisible, feels the intangible and believes the impossible.” - Author Unknown

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” – Mother Teresa

“We must embrace pain and burn it as fuel for our journey.” – Kenji Miyazawa

Tuesday, October 20, 2009

CHERUBS HOPE Totebag Project Delivers 1st Totebag to CDH Family

Our CHERUBS HOPE (Helping Other Parents Expecting) Totebag Project delivered our first tote bag in person on October 19th.



Dawn had the absolute pleasure of meeting the Hobbs family at Duke. Cherub Andrew is there fighting Congenital Diaphragmatic Hernia and on ECMO. He is absolutely adorable and such a little fighter moving his hands and feet and eyes while sedated! His wonderful parents, Gene and Becky, are so sweet and we hope to get to know them and watch Andrew grow. Thank you so much for letting us welcome your little guy into the world and welcome you into CHERUBS!


In all, we have delivered and mailed out 24 totebags to new and expectant CDH families so far! It's taken 2 years, a lot hard work, a lot of donations and a huge community effort by all CHERUBS members to get this project finally going and these bags finally mailed out and we are so very, very proud of how all of our members have worked together to help new CDH families!

So many CDH families have done so much to help this project without any desire for recognition, any need to put their own cherubs on pedastals or any other motives other that to help other CDH families. Their hearts only focused on giving and helping others.... there is no higher generousity than that!

"Everyone working as a team - together - CDH families helping other CDH families. That's the true spirit of the CDH community and I am so proud to know each one of you!! Your kindness and selflessness is so deeply appreciated and admired and all your work and love will pour out in this bags to help so many CDH families! Thank you!

THIS is why CHERUBS exist! This is what we're here for, why it was created, what our mission is. Days like today remind me of that. Just to see that beautiful little fellow fighting CDH and to try to let a family know that they aren't alone and to hopefully give them information and support. This is why we exist. I am so proud of our members" - Dawn Williamson, President & Founder of CHERUBS








We would like to thank the following who have either donated items for the bags** or helped to contribute to the CDH Baby Book:

- Alliance of Congenital Diaphragmatic Hernia Organizations

- Amy Atkins - in honor of Faith Atkins

- Amy Miles - in memory of Faith Miles

- Amy Rademaker – in memory of Jonathan Rademaker

- Angie Finley - in honor of Tyler Finley

- Barbara Wagner – in honor of Logan Wagner

- Big Y Store

- BJ's Wholesale

- Boston Children’s Hospital

- Brenda Slavin – in memory of Amanda and Nicolas Slavin

- Brian Anthony

- Cathy Colvin - in memory of Kasey Colvin

- CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

- Children’s Hospital of Philadelphia

- Christie Brooks - in memory of Madison Brooks

- Chuck and Kara Hess – in honor of Adam Hess

- Cindy Collins - in honor of Jason Collins

- Corin Nava – in memory of Gabrial Nava

- Craig Williamson – in memory of Shane Torrence

- Danielle Kessner – in memory of Alyssa Kessner

- Darcy Miller

- Darlene Silverman – in honor of Emily Daly

- Dawn Williamson – in memory of Shane Torrence

- Denise Dunfee.- in memory of Ryan Mudderman

- Denise Richer

- Elaine Moats – in honor of Kristin Moats

- Fetal Care Center of Cincinnati

- Gail Hyziak – in honor of Michael Hyziak

- Garret Williamson – in memory of Shane Torrence

- Iris Adame – in memory of Aileen Adame

- International CDH Study Group

- Jay Wilson, MD

- Jeanne Nava - in memory of Gabriel Nava

- Judi Toth – in memory of Christopher Toth

- Karla Holt – in honor of Braden Holt

- Kate Crawford - in memory of Shannon Crawford

- Kathy Shelton - in honor of Logan Wagner

- Kevin and Nicolle Colvin - in memory of Kasey Colvin

- Kim Richards – in memory of Olivia Richards

- Kim Switzer – in memory of Asher Switzer-McCoy

- Leah Koehn - in honor of Jacob Koehn

- Lesli Taylor, MD

- Maria LaFond Visscher – Abiding Hearts

- Michael Harrison, MD

- Pam Lally, MD

- Rachel Holt - in honor of Braden Holt

- Shana Kelly – in honor of Landon Kelly

- Shandi & Paige Cox – in memory of Caleb Cox

- Shauna Curtis - in honor of Addison Curtis

- Stephanie Olivarez - in honor of Shelby Olivarez

- Tamara Klein

- Tammy Spohr – in honor of Bryston Spohr

- Tara Hall – in honor of Brandon Hall

- The International CDH Study Group

- Theresa Wellman – in memory of Donnie Wellman

- Tyler Welch - in memory of Jamie Welch

- Wal-Mart

- Willie & Megan Skaggs – in memory of Michael Joseph “MJ” Skaggs


Learn more about our totebag project here - http://www.cdhsupport.org/donate/hope.php

Learn more about needed donations here -
http://cdhsupport.org/members/viewforum.php?f=237


*** We took over this project from a member. A lot of donations have not been properly accounted for. If you donated an item or money and are not listed above, please let us know!

Prayers & Quotes for October 20, 2009

Back in the days a few years ago when CHERUBS used a listserv instead of our new forums we used to post weekly prayer requests and often posted quotes on our posts, site, newsletters, etc.

Now, we have decided to start posting them again on our blog, forums and other sites. There can never be enough prayers and well wishes for these precious babies!

Please keep the following in your thoughts and prayers:

Cherub Mattson who is having surgery on his shunt today
Cherub Isabel who has H1N1
Cherub Connor who has H1N1
Cherub Jaime who has reherniated
Cherub Camden who is having a repair done on Oct. 30
Newborn cherub Andrew who is on ECMO
Newborn cherub Emery who is on ECMO
Newborn cherub Chase who is starting to wean off of ECMO
Newborn cherub Mia who is still in the hospital (but going home soon!)
Newborn cherub Zoe who is very sick in the hospital
Newborn cherub Carter who is still in the hospital and weaning off of oxygen
Cherub Juan Pablo, newly diagnosed with Autism
Cherub Russ who is going to have hand surgery soon
Cherub Ian who has been sick but is home out of the hospital now (yeah!)
Newborn cherub Zoey
Newborn cherub Savannah
Newborn cherub Baby S.
Newborn cherub Baby G.
Newborn cherub Scarlette
Newborn cherub Baby K.
Newborn cherub Ellie
Newborn cherub Baby H.
Newborn cherub Isaac
Newborn cherub Jaxon
Newborn cherub Emma
Newborn cherub Elinor
Newborn cherub Michael
Newborn cherub Alistair
Newborn cherub Blake
Newborn cherub Jacob
Newborn cherub Darcie
Cherub sibling Jai who has been sick
The White family

Cherubs On Their Way:

Zoey W.
Baby S.
Baby G.
Robert D.
Kalliope R.
Matthew D.
Leslie L.
Nevaeh J.
Joseph S.
Baby R.
Baby R.
Baby C.
Baby D.
Sunshine B.
Baby K.
Jayden M.
Baby V.
Baby H.
Enjole H.
James N.

All of our newly grieving families - there have been a lot lately. :(

Vincent S.
M.J. S.
Chloe T.
Callie G.
Averi G.
Rafael E.
Jonathan M.
John H.
Floyd D.
Jake M.
Xavier M.
Ireland B.
Travis F.
Ruby G.
Charlie S.

If you have a prayer request for a cherub or family member of a cherub, you can send it to prayers@cdhsupport.org

A HUGE thank you goes out to Tracy Meats who is going to take on the task of Prayer Coordinator! Thank you Tracy for all of your help, we appreciate you so much!

In the last 15 years since our first quotes in our first newsletter, quotes have bought a lot of hope and wisdom to CDH families and you can see them shared all over the internet in all groups, sites, etc. We hope that these give more inspiration to CDH families:

"When it is dark enough, you can see the stars" - Charles A Beard

"Were it not for hope the heart would break" - Scottish proverb

"We'd never know how high we are till we are called to rise; and then, if we are true to plan, our statures touch the sky" - Emily Dickinson

"We should not let our fears hold us back from pursuing our hopes" - John F. Kennedy

"We promise according to our hopes and perform according to our fears" - Francois De La Rochefoucauld

"To keep a lamp burning, we have to keep putting oil in it" - Mother Theresa

"We judge a man's wisdom by his hope" - Ralph Waldo Emerson

"We must accept finite disappointment, but we must never lose infinite hope" - Martin Luther King, Jr.

"The soul at its highest is found like God, but an angel gives a closer idea of Him. That is all an angel is: an idea of God." - Meister Eckhart

"Give of yourself as the Angels do, and wonderful things will come to you." - Ramadan

"It is impossible to see the Angel unless you first have a notion of it." - James Hillman

"Every blade of grass has an angel that bends over it and whispers, 'grow! grow!'" - Talmud

"Courage is the first of human qualities because it is the quality which guarantees all others." - Winston Churchill

"I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker." - Helen Keller

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do" - Eleanor Roosevelt

Friday, October 16, 2009

Get out your video camera - we need help with kids book!

As part of our new kid's book project, we will have a song and a video. We need videos of kid's explaining what Congenital Diaphragmatic Hernia is in their own terms. The best one will be created into the text of the new kid's book!

Simply video tape your child (cherub or sibling or cousin) explaining the best that they can (in kid's term) what CDH is. Then send us the video to events@cdhsupport.org


Vote for Dawn Williamson & CHERUBS to help win $5,000 for charity!

http://www.qdobaqmmunity.com/Nominee/id/231/Dawn_Williamson

"Qdoba will donate $5,000 to that charity and a Starlight Fun Center mobile entertainment unit will be donated to a hospital in the winner's region in their name".

In this case, because CHERUBS isn't listed as one of the charities that we can donate to (they go through Charity Navigator - charities must receive a minimum of $500,000 in public donations a year to be listed. CHERUBS doesn't come close to that amount to be eligible to be listed).

BUT, if we win, Duke University Medical Center, an up and coming CDH Hospital, will receive the $5000 sponsor donation (made on behalf of CHERUBS) to benefit CDH families and research only.

So technically, CHERUBS (or Dawn) does not get a cent from this contest but CDH families will benefit if we win!!!!

And this is a great way to raise CDH Awareness! :)

You can vote once a day, every day. http://www.qdobaqmmunity.com/Nominee/id/231/Dawn_Williamson





Vote for Dawn Williamson & CHERUBS to help win $5,000 for charity!
Nominated by Dawn's husband






Dawn created CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support in 1995.

Dawn is the mom of Shane Torrence (1/28/93-9/11/99), born with left-sided Congenital Diaphragmatic Hernia (CDH) and multiple birth defects. CDH is a devastating birth defect that affects 1 in every 2500 babies. It occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive. The cause is not known.

Immediately after Shane's birth and diagnosis, Dawn searched for a support group for CDH but there were none available that could help her. After spending hundreds of hours in the hospital's medical library and finding support only from parents met at the hospital, Dawn felt a great need for a CDH charity.

With the help of Shane's surgeon and friends made at the hospital, CHERUBS was started. CHERUBS is founded in memory of, and named for all CDH babies that do not survive.

She started CHERUBS at 22 years old with just a typewriter, kitchen table, $100.00 in donations, and 2 members. By 2009 CHERUBS has over 3000 members in 38 countries and is the world's largest and most active CDH organization raising awareness, supporting families and researching CDH.

CHERUBS offers CDH families over 50 services. From newsletters to on-line forums. From international conferences to local picnics. From CDH research studies to researching CDH in medical journals. Now, Dawn is fighting a trademark inhibiting CDH Awareness and has led the way to submit 2 bills to the U.S. Senate to raise CDH Research money and protect all causes from trademarks on awareness. Dawn has spent over a decade compiling every possible service to CDH families and it seems she will not stop until CDH is no more.

For the past 15 years Dawn has dedicated her life to helping families of children born with CDH. Through her own loss of her precious son and other tragedies, she has worked a full-time job and continued to volunteer up to 50 hours a week at CHERUBS. She is the heart and soul of the organization; planning events, fundraising, creating and delivering services, visiting families, running the web site, maintaining the research database and so much more. It is not uncommon for her take calls at 2 in the morning from distraught parents who just received a diagnosis or lost their child. She travels to conferences, paying out of her own pocket the expenses just to reach more families. She gives interviews to the media, has advised television shows about CDH and runs the charity's on-line marketing campaign. When there are not enough donations to pay a bill, she will cover the cost herself, determined to keep CHERUBS free for families. She is the charity's newsletter editor, event planner, mail clerk, secretary, accountant, graphic designer, fundraiser, grant writer, leader. She is the collective global voice of CDH families.

Those who know her personally know she feels very protective over these families and babies. When a trademark was laid upon "Congenital Diaphragmatic Hernia Awareness", it was Dawn who rallied 1000's of families and doctors in the CDH community and who put her own neck on the line to say "CDH Awareness belongs to everyone". We've seen her cry after putting down the phone when talking to a parent who just lost their baby. I've watched her make a dozen calls to make sure that a family had a place to stay at the hospital or to help an overseas family get in touch with a CDH specialist.

She runs CHERUBS from her home to save money. She covers the cost of the phone bill. It is Dawn who is awake at midnight answer 1 of 200 e-mails she receives each day, trying to respond to every family who requests her help. I've watched her determined face making calls for donations and sponsors to try to pull off an event and I've watched her struggle to find new ways to fund services for families.

I know that it must not be easy to do what she does every day and still grieve for her own son. She will immediately correct anyone who says that she runs CHERUBS in memory of Shane or that it is a foundation for him, letting them know in no uncertain terms that CHERUBS was created for all CDH families. She will quickly come to the aid of any CDH parent in need and will quickly correct anyone who tries to harm the CDH community. She's fierce and determined like a mother lioness protecting her cubs when it comes to tackling CDH but her heart and dedication to these families is as soft as it comes. She never puts herself above others and she blushes if anyone tries to compliment all that she's accomplished. She rarely talks about her own story and so shy, she never brags about all she's done. If you ask her, she'll tell she's "just another CDH mom".



I know that she gives up a large part of her time and her life to dedicate herself to this worthy cause. As her husband, I watch her struggle daily with the enormous workload she carries freely upon her shoulders in her determination to make life a little easier for 1000's of families she may never meet. My admiration for what she does and for who Dawn is cannot be put into words. I cannot imagine anyone in this world who works as hard for these babies as Dawn does and no one who deserves to be recognized more.

Supported charity: Duke University

CHERUBS: http://www.cdhsupport.org








Prizes and Rules

PRIZES

  • The charity associated with the winning nominee in this Campaign will receive a donation from Qdoba of $5,000.
  • Qdoba will also donate a Starlight Children’s Foundation Fun Center mobile entertainment unit to a hospital in the winning nominee’s region.

VOTING

  • Voting begins at 12:01 a.m. Mountain Time (“MT”) on October 6, 2009 and ends at 11:59 p.m. MT on November 1, 2009. During the week of November 2, 2009, the five (5) finalists from the Voting Period will be announced. In the second part of the Campaign, the judging panel will judge the five (5) finalists and select one (1) winner, who will be announced during the week of November 16, 2009.
  • One vote per registered participant per day.

WINNER SELECTION

  • Five eligible nominees (and their respective associated charity) with the highest total number of votes will be potential finalists. One finalist nominee and associated finalist charity will be chosen by Qdoba (and an independent review committee) to be the winner of this campaign.
  • The winner will be announced on the Qmmunity Website during the week of November 16, 2009.

PARTICIPATION AGE

  • You must be 18 years of age and a resident of the United States.

For full Terms and Conditions Click Here









Wednesday, October 14, 2009

October 15, 2009 - International Baby Loss Day

http://www.october15th.com/

October 15th is international Baby Loss Day, which remembers babies lost around the world for any reason.

CHERUBS has always supported this day and National Children's Memorial Day and worked alongside the 1000's of other organizations and families affected by the loss of children.

On October 15th please light a candle at 7:00. Candles will be lit around the world, created a global light of prayers and support for families.

Five UCSF scientists named to Institute of Medicine

Congratulations to CHERUBS Medical Advisor, Dr. Michael Harrison!!!!!


http://news.ucsf.edu/releases/five-ucsf-scientists-named-to-institute-of-medicine/

October 12, 2009

Five UCSF scientists named to Institute of Medicine

Five UCSF faculty scientists are among the 65 newly elected members to the Institute of Medicine (IOM), part of the National Academy of Sciences.

Election to IOM is considered one of the highest honors in the fields of health and medicine. The new members were announced today (Oct. 12, 2009) at the IOM annual meeting.

The new UCSF members are:

  • Deborah Grady, MD, MPH, professor of medicine and associate dean for clinical and translational research; and director, UCSF Women’s Health Clinical Research Center
  • Lawrence W. Green, DrPH, professor, UCSF Department of Epidemiology & Biostatistics; and co-leader, Society, Diversity & Disparities Program, UCSF School of Medicine and UCSF Helen Diller Family Comprehensive Cancer Center
  • Michael R. Harrison, MD, professor emeritus of clinical surgery, pediatrics, obstetrics, gynecology and reproductive sciences; and director emeritus, Fetal Treatment Center, UCSF Children’s Hospital
  • Sam Hawgood, MBBS, dean and vice chancellor for medical affairs, UCSF School of Medicine
  • Roger Nicoll, MD, professor of cellular and molecular pharmacology and physiology

The election brings to 71 the number of UCSF faculty who are members of the prestigious Institute. Election to the Institute recognizes those who have made major contributions to the advancement of the medical sciences, health care and public health.

Grady - As co-director of the UCSF Clinical and Translational Science Institute, Grady is focused on transforming clinical and translational research to ensure that the best health solutions get to patients and the community as quickly as possible. She also is an international expert on menopause and the risks and benefits of postmenopausal hormone therapy. With colleagues at UCSF, she designed and conducted the Heart and Estrogen/progestin Replacement Study (HERS), a clinical trial of 2800 women with known coronary disease. The main results of this study showed no reduction in risk of heart attack or stroke among women who took hormones for four years. She currently is working with colleagues to help understand the cause of menopausal symptoms and to develop new treatments.

Green - Green joined the UCSF faculty in 2005 and specializes in population sciences research in cancer and other chronic diseases. Green’s research at UCSF includes reducing disparities in cancer. In a current project, he is looking at screening for colorectal cancer in the context of flu vaccine clinics. He has had an extensive career in both academia and international public health, focusing on translational research and health policy. As director of the Office of Health Promotion in the Carter Administration, he participated in the early development of the Healthy People Initiative, which since 1979 has continued to contribute to programs in health promotion and disease prevention. At the Centers for Disease Control and Prevention, he led international programs in tobacco control and national programs in community-based participatory research.

Harrison - As founding director of UCSF’s Fetal Treatment Center, Harrison is internationally renowned for his expertise and innovation in pediatric and fetal surgery and is author of more than 400 hundred peer-reviewed articles and several textbooks. Widely regarded as the “father of fetal surgery,” Harrison established the developmental pathophysiology of correctable birth defects in animal models, developed and tested techniques for fetal intervention, performed the first successful human fetal surgery for congenital diaphragmatic hernia and later for a number of other fetal anomalies, and initiated the first NIH-sponsored clinical trials for fetal surgery. Harrison’s current research focuses on pediatric orphan device development, for which he recently received one of three stimulus grants awarded by the FDA to fund a pediatric device consortium at UCSF.

Hawgood - Hawgood is the newly appointed dean of the UCSF School of Medicine. He previously served as interim dean and led the school in advancing a campuswide strategic plan that included expanding translational research, fostering patient-centered care, and furthering global health. He has been actively involved in planning the new UCSF Medical Center at Mission Bay, scheduled to open in 2014 with specialty hospitals for children, women, and cancer patients. Hawgood also directs a major NIH grant that supports a range of UCSF projects that seek a new basic understanding of lung biology and pulmonary diseases. He is past president of the Society for Pediatric Research and a past trustee of the International Pediatric Research Foundation.

Nicoll - Nicoll is renowned for his pioneering discoveries about the way in which the brain learns and remembers. Over several decades he has shown that learning and memory occur when neural connections between nerve cells in the brain are strengthened. This capacity to strengthen a connection, known as synaptic plasticity, or long-term potentiation, is considered the linchpin for processing, storing and recalling all information in the brain. Nicoll’s research focuses on the brain’s hippocampus, which is severely damaged in Alzheimer’s disease. Understanding the chemistry of thought could enhance drug design for Alzheimer’s and other degenerative diseases of the brain. He is a scientific member of the Wheeler Center for the Neurobiology of Addiction at UCSF.

The IOM total active membership is now 1,610. Five individuals also were elected as foreign associates, bringing the total members in that category to 93. With another 75 members holding emeritus status, IOM’s total membership is now 1,778.

Established in 1970 by the National Academy of Sciences, the Institute is recognized as a national resource for independent, scientifically informed analysis and recommendations on health issues. With their election, members make a commitment to volunteer their service as members of IOM study committees, boards and other activities.

Current active members elect new members through a highly selective process in which candidates are nominated for their professional achievement and commitment to service. The Institute’s charter stipulates that at least one-quarter of the membership is selected from outside the health professions, from such fields as the natural, social, and behavioral sciences; law; engineering; and the humanities.

UCSF is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care.

Source:
Kate Schoen

2009 CHERUBS Angel Ball has been Cancelled

We regret to post that we have to cancel this year's Angel Ball.

Due to a lack of sponsorship in this tough economy, we were not able to put together enough resources and support to make this year's event happen. All tickets will be refunded.

This has been very upsetting to our organization and unfortunately, will set us back on some of the services that we offer families affected by Congential Diaphragmatic Hernia as we count on this event's success to help fund our mission. But we will be back next year and have already started planning the event.

We appreciate all the support from the many people who bought tickets, volunteered and helped to promote this event. Your encouragement and assistance has been a blessing to our organization and our members.

If you would like to help sponsor our 2010 Angel Ball or would like to volunteer your services please contact us at
events@cdhsupport.org

Saturday, October 10, 2009

CDH, Pulmonary Issues, Flu, H1N1, RSV and vaccines

CHERUBS is reminding CDH parents to talk to their pediatricians about the RSV shot. RSV kills more young children than the flu and H1N1 combined - especially those with weak lungs like cherubs.

And if you get a vaccine for any illness, make sure to test i
t for allergies (many are egg-based and these kids often have allergies).

Talk to your child's doctors about what vaccines are right for your cherub!

Friday, October 9, 2009

Let's get Dr Oz to do a CDH show

Ok CDH families, let's get Dr Oz to do a CDH show!

Share your story or copy and paste CDH info (you can use any of ours posted here or on our blog, site, etc)

http://www.doctoroz.com/plugger?tid=21

Below is Dawn's letter - feel free to grab any statistics!


------------------------------------

Dear Doctor Oz,

Please consider doing a show on Congenital Diaphragmatic Hernia.

CDH is a devastating birth defect that affects 1 in every 2500 babies. A baby is born with CDH every 10 minutes - this adds up to half a million babies since 2000. This is as common as Cystic Fibrosis and Spina Bifida but yet most of the public has never heard of it. CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to move into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive. The cause is not known.

I run an international grassroots charity here in the NC called CHERUBS. We help families of babies born with Congenital Diaphragmatic (CDH). CHERUBS was founded in 1995 after my son was born with CDH and transferred to Duke. I was 19 years old, there was no internet, no support group and no information. Thus, CHERUBS was started and now we help 1000's of families, on a shoe-strung budget with no paid employees, and we run the largest long-term CDH research database in history. We are the world's oldest and largest CDH organization and work with families and doctors in 38 countries. Yet, we are struggling to raise CDH Awareness.

We have dozens of members who would love to be on your show and talk about their children. You could talk about CDH repair, in utero procedures such as fetal tracheal occlusion, ECMO, long-term issues, etc.

CDH is as common as Spina Bifida and Cystic Fibrosis, yet we have so little awareness and virtually no research. Your show could do so much for our cause by bringing CDH Awareness to millions. And I know it can help so many CDH families to less alone.

We would be so appreciative if you would consider doing a story on CDH.

Thank you so much.

Dawn Williamson
CHERUBS President & Founder
919-610-0129
http://www.cdhsupport.org
http://www.cdhresearch.org
http://cdhsupport.blogspot.org
http://www.shane-torrence.org (my son's story)







DRG Property Services Offers CHERUBS Members discounts and donations in honor / memory of their cherubs

DRG Property Services is a company run by one of our members and her family, Amy Miles - mom to cherub Faith Miles. The Miles family has been a huge supporter of CHERUBS and the CDH Community. Once again, they are reaching out to help our organization!



DRG Property Services would like to offer CHERUBS members a discount on vacation home rentals in the Orlando, FL area.

Check out our website at www.drgprop.com.

We would like to offer your members a 5% discount on their vacation home booking. We have pool homes, town homes, and condos available for any time of the year!

As a special offer to CHERUBS members, if you book through Amy Miles she will donate $10.00 to CHERUBS in memory or honor of your child.

Amy Miles
Suite 336
3956 Town Center Blvd.
Orlando, Florida 32837
407-401-9494
Fax 407-264-6987

Amy with her cherub, Faith Grace Miles

CHERUBS Australia Annual Forum - October 16-18, 2009 i n Melbourne



http://cdh.org.au/


Host:
Type:
Network:
Global

Start Time:
Friday, October 16, 2009 at 9:00am
End Time:
Sunday, October 18, 2009 at 5:00pm
Location:
Rydges North Melbourne
Street:
Cnr Flemington and Harker Rd (Opposite the Royal Children's Hospital)
City/Town:
Melbourne, Australia

Email:

3rd Annual Jack's Baby Shower in Huntsville, Arkansas for the Jack Ryan Gillham Foundation on October 18, 2009


The Jack Ryan Gillham Foundation is a fellow member of ACDHO and we're proud to post their upcoming event!

On October 18, 2009 from 2:00 - 4:00 pm, the Jack Ryan Gillham Foundation will be hosting the 3rd Annual Jack's Baby Shower at the Carroll Electric Building in Huntsville, Arkansas.

At this event we wi
ll gather needed items for the Ronald McDonald House and Arkansas Children's Hospital. There will be food, drinks, and a bouncy house for the kiddos!! So bring your family and come on out!!


http://www.jackryangillham.org/Current_Events.html

Christmas with Kasey Fundraiser and CDH Awareness Event

Kasey James Colvin
11.16.08-12.19.08


http://kaseyjamescolvin.blogspot.com/


Christmas with Kasey Fundraiser and CDH Awareness Event

"On November 14th from 1-5 P.M at the Stampede Mesquite Grill & Dance Emporium, we will be having a fundraiser in memory of our son Kasey James Colvin. The fundraiser is designed to have something for all ages. The silent auction that will run simultaneously with other activities including photos with Santa, crafts and more!

Kasey was born with an undetected left side Congenital Diaphragmatic Hernia, which means that his diaphragm didn’t form correctly before birth. There is no known cause for Congenital Diaphragmatic Hernia. Kasey was born with a hole in his diaphragm, which allowed his spleen and intestines to move up through the hole and settle on top of his left lung which then didn’t develop. This also puts pressure on the heart as well, and this greatly affected growth and function of Kasey. The effect of a Congenital Diaphragmatic Hernia is often fatal, only 50-60% of babies survive. Unfortunately Kasey wasn’t one of those babies who was lucky enough to beat his ailments. Congenital Diaphragmatic Hernia occurs in 1 in 2500 births which is as common as Cystic Fibrosis and Spina Bifida, but the outcome of a Congenital Diaphragmatic Hernia is frequently much worse.

Our goal is to raise money to donate to research and to Saint Joseph’s Neonatal Intensive Care Unit so education and medical advances will allow these babies to have a better survival rate than they currently do. If you would please, help us to raise money for this life threatening birth defect. A donation from you for our silent auction would help us tremendously. Thank you for your support."

Kevin and Nicolle Colvin

ChristmaswithKasey@Gmail.com

Stampede Mesquite Grill & Dance Emporium
2430 S Havana Street
Aurora, CO 80014

http://kaseyjamescolvin.blogspot.com/


CHERUBS Winter Book Club for Families affected by Congenital Diaphragmatic Hernia


Introducing CHERUBS Winter Book Club!

Since so many CDH families are shut in during the winter months and we know that a lot of members are dealing with depression and grief because of CDH, we thought that maybe we could start a book club to help distract from the loneliness and sadness of the winter months!

To join in, just log onto our site at

http://cdhsupport.org/members/viewtopic.php?t=3413&highlight=

CHERUBS Leads The Way For CDH Information and Support



"Do not go where the path may lead, go instead where there is no path and leave a trail" - Ralph Waldo Emerson

We have done a lot of posting today and are receiving a lot of great feedback. And also news that our posts are being reposted all over the internet!

We LOVE that CHERUBS is always ahead of the game announcing CDH research, services and projects!


As the world's first, largest and most active CDH charity we feel it is our duty to lead the community in posting the latest research and news and offering new services continuously. We have the BEST members and volunteers who work together to benefit CDH families and the whole CDH community!

Even other organizations and groups track our blogs and posts to keep up with CDH - imitation is indeed the sincerest form of flattery so we're so glad that everyone comes to CHERUBS to see what we're posting! We are honored to be the one of the CDH community's top resources for information, awareness, research and support!

Feel free to post our... posts on your FB acct, blogs, sites, etc!!!! At CHERUBS we're always happy to share our hard work to raise CDH Awareness!!

For more CDH support, research and information please visit our site http://www.cdhsupport.org

Congenital Diapraghmatic Hernia: Outcomes

Description of the outcome possibilities for a fetus with Congenital Diapraghmatic Hernia (CDH). Presented by Doug Miniati MD, Assistant Professor, UCSF Fetal Treatment Center



Congenital Diapraghmatic Hernia: State of Current & Future Research

The state of current research into Congenital Diapraghmatic Hernia (CDH) and what possible research opportunities lay in the future. Presented by Doug Miniati MD, Assistant Professor, UCSF Fetal Treatment Center.




CDH In The News - "Renovation for Ronald McDonald House"

http://abclocal.go.com/wpvi/story?section=news/local&id=7041408










Renovation for Ronald McDonald House
Wednesday, September 30, 2009 | 6:43 PM
ABC6 Action News

By Lisa Thomas-Laury

CAMDEN, N.J. - September 30, 2009 (WPVI) -- The Ronald McDonald House of Southern New Jersey celebrated a big $2-million dollar facelift today. It so happened on the 26th birthday of the home away from home for seriously ill children's families.

The project adds 3,800 square feet to the existing building and includes a completely renovated kitchen and a new recreation room, with a working model train set, inspired by the Philadelphia Eagles.

Paul Campise of Moorestown built the set for the 2005 Super Bowl and donated it to the Ronald McDonald House this year.

"I wanted to give it to somebody where kids could enjoy it and I managed to hook up with the Ronald McDonald House," Camprise said.
The Ronald McDonald House of Southern New Jersey celebrated a big $2-million dollar facelift today. It so happened on the 26th birthday of the home away from home for seriously ill children's families.

The project adds 3,800 square feet to the existing building and includes a completely renovated kitchen and a new recreation room, with a working model train set, inspired by the Philadelphia Eagles.

Paul Campise of Moorestown built the set for the 2005 Super Bowl and donated it to the Ronald McDonald House this year.

"I wanted to give it to somebody where kids could enjoy it and I managed to hook up with the Ronald McDonald House," Camprise said. The project also had volunteers redecorate the bedrooms with age-appropriate themes including Dora the Explorer, Wizard of Oz, and Harry Potter.

It is, after all, all about those who come to the Ronald McDonald House.

Jenni Pappas and her 3-year-old daughter Elena, from Memphis, are staying at the Ronald McDonald House, while awaiting the birth of a new baby, who has a congenital diaphragmatic hernia and will need care for several months.

Andrew Pappas says his family is grateful to be here.

"For Jenni and the peace of mind that she has that we're all together in a safe place, you can't put a price on it," Andrew said.

The Weaver family from Mississippi is staying at the House with their 3-year-old and an infant son, while his twin is treated for congenital heart disease next door at Cooper Hospital.

"So when you think about them coming from all over the world to get the best medical treatment for their children, affordability is really an issue, but more than affordability, it's that support system and this house accomplishes both," Denise Viola-Monahan of the Ronald McDonald House said.

For the Ehwakkad family it's a return visit, all the way from Egypt.

Doctors in Cairo told 14-year-old Ahmed, who broke his spinal column playing soccer, he'd never walk again, but surgery at the Hospital of the University of Pennsylvania has him back on his feet, and equating his visits, with a summer vacation; a vacation with a renovation that may be worth more than $2-million for those who come to visit.

Goodsearch and Goodshop for CHERUBS - it's a free way to raise money for a great cause!


GoodSearch: You Search...We Give!

You can raise money just by searching or shopping on-line! By going through Goodsearch.com instead of Google, Yahoo or another search engine, Goodsearch donates money to CHERUBS. It does not cost you a penny and it is powered by Yahoo. You can shop at 1000's of stores!

To make it even easier, you can download the free GoodSearch toolbar! It is safe and easy to install and it makes it so easy to search on-line and to shop as well! And it helps stores to remember that you are GoodShopping for CHERUBS even if you forget to go through the GoodSearch site to go shopping! You can download it at http://www.goodsearch.com/toolbar/ Don't forget to choose CHERUBS as your designated charity.



We all search on-line. We all shop on-line. Instead of making money for the search engines and stores, let's use Goodsearch to divert some of their profit to our great charity instead!

All money raised through Goodsearch will go to our CDH Family Assistance Fund, to help families meet their financial needs while dealing with Congenital Diaphragamtic Hernia.

Please also invite your family and friends to Goodsearch too!






YOU SEARCH OR SHOP...

WE GIVE!

Search the Web now
Money-saving coupons



Raise money for CHERUBS - The Association of Congenital Diaphragmatic Hernia Research Advocacy and Support just by searching the web and shopping online!




CDH Fundraisers on Firstgiving.com

Come see how some CDH families are raising funds for CHERUBS on Firstgiving!!!!! You can get a FREE fundraising page for your cherub also! Thank you all so much for helping up to help families affected by Congenital Diaphragmatic Hernia!


Brienna Jaburg has raised over $2000 so far for cherub Elijah's birthday. Wow, Brienna, WTG!!!!!!!! We need to get you on our Fundraising Committee! :)
http://www.firstgiving.com/briennajaburg

Desiree is raising money in memory of Marley Jane - http://www.firstgiving.com/desireecasillas

Kim is raising money in memory of Asher - http://www.firstgiving.com/babyasher

Kara is raising money in honor of Adam - http://www.firstgiving.com/karahess1

Dawn is money in memory of Shane - http://www.firstgiving.com/shanetorrence

Barb is raising money in honor of Logan - http://www.firstgiving.com/loganscdhfundraiser

Paige is raising money in memory of Caleb - http://www.firstgiving.com/paigecox

Allison is raising money in honor of Baby Forte - http://www.firstgiving.com/babyforte

Bessie raising money in memory of Emily - http://www.firstgiving.com/bessiebatton

Elizabeth is raising money in honor of Isabel - http://www.firstgiving.com/isabelruth

Heidi is raising money in honor of Julia - http://www.firstgiving.com/juliagcarlson

Megan is raising money in honor of Alyssa - http://www.firstgiving.com/honoralyssa

Stephanie is raising money in honor of Cody - http://www.firstgiving.com/codyajmaerten

The Decker Family is raising money in honor of Angelina - http://www.firstgiving.com/angelinadecker



New CDH Awareness Profile Stickers for Facebook!

Now you can raise CDH awareness all over Facebook by adding a Congenital Diaphragmatic Hernia Awareness Ribbon sticker to your profile photo. There are ribbons for both dark and light background photos. They are free and they help to raise CDH Awareness on your profile and on any application, game, cause, group etc that you join that people can see your profile photo in.

You can find and add the official CDH Awareness Ribbon stickers here: http://apps.facebook.com/fribbon/group.php?gid=548&ref=nf_t&ref=nf


We are really excited about this new sticker and about all the awareness that we are raising on Facebook! CHERUBS Facebook cause has reached over 7500 people and grows every day! Plus our groups, fan pages, event pages and more have reached over 10,000! Way to go CHERUBS members on Facebook!!!!