CHERUBS Spring 2009 Silver Lining CDH Newsletter

CHERUBS latest newsletter issue is out!

Event information, 5 CDH funds, new stories of cherubs, Adopt A Hospital and much, much more!!!

http://www.cdhsupport.org/newsletter/Sp09SilverLining.pdf






“I Own Congenital Diaphragmatic Hernia Awareness” Video

Starring over 300 CDH families in the fight against the trademark on “Congenital Diaphragmatic Hernia Awareness” filed by Breath of Hope, Incorporated.

http://www.ipetitions.com/petition/cdhawareness/
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
http://www.cdhsupport.org
http://www.cdhresearch.org

Take A Stand Against Congenital Diaphragmatic Hernia

CHERUBS Phone Survey Results

On February 15th, Kohl’s Department Store volunteers conducted a phone survey of CHERUBS members. They called over 250 random members located in the United States. The results are as follows:

Question #1. Are you happy with CHERUBS services?

We had requests for more local events and more newsletters.

Question #2. What other services would you like to see?

Again, we had requests for more local events and more newsletters.

Question #3. Do you plan on attending the 2009 Conference in Texas?

Question #4. Would you be interested in participating in a CDH Research Survey this year?



Question #5. Would you be interested in donating $20.00 a year to help our charity?

CHERUBS 2009 International Member Conference

Finally, it is all finalized and we have the hotel information! I will be posting more information (driving directions, etc) soon. The Holiday Inn Select San Antonio Airport 77 NE Loop 410 San Antonio, TX 78216 210-349-9900 http://www.hisairport.com CHERUBS Room Rate is $89.00 CHERUBS Room Rate + Breakfast for 2 adults is $97.00 Breakfast is not free with your room! I’m sorry, we tried, but this is the best we can do! Feel free to bring milk, cereal, etc if you want to save money! I think kid’s do eat free in the dining room (per their site). Rooms come with coffee makers, microwaves and mini fridges. There is a pool, restaurant, bar and fitness center. Free internet. To receive the CHERUBS discount you *MUST* tell them you are CHERUBS members when you book the room and you must book it for July 22-25th or longer. We have to book 25 rooms to get our discounts and freebies so please, please, PLEASE stay at this hotel!!! It’s definitely the best value around anyway!!! 🙂 I was planning on rooming myself with another mom but because we need to book those rooms I’m now booking my own room. I know several of you are rooming but please reconsider if you can afford it (we totally understand if you can’t! We just want you to attend either way!). We worked really hard to find a decent, safe hotel that was inexpensive and we hope we did ok. It’s not glamorous but then, we didn’t want our members paying $150 a night to stay on the Riverwalk. This hotel is near the airport and includes an airport shuttle and will also go anywhere in a 2 mile radius of the hotel (that’s not including the Riverwalk or Sea World, but does include the malls). They have been very generous to us and are allowing us a FREE suite for the kids during the conference and are only charging us a cleaning for the Meeting Room… that’s saving us $1000’s!!! So a huge thank you to the Holiday Inn Select!!! We’re working on the conference web site and brochure, as well as locking in our 3 speakers and kid’s entertainment. Tentatively, here’s our schedule: July 22, 2009 – Check In July 22, 2009 6:00 pm to 9:00 pm – Pizza Party and Introductions July 23, 2009 8:00 am to 12:00 noon – Conference July 24, 2009 8:00 am to 12:00 noon – Conference July 25, 2009 8:00 am to 12:00 noon – Conference July 25, 2009 – Check Out That gives everyone the afternoons & evenings to go play. Our guest speakers will speak on CDH Research, Genetics and Repair – including the head of the CDH Study Group, Dr. Lally. Round table discussions will be held for both parents of survivors and grieving parents. There will be free babysitting during conference hours for the kids (volunteers needed!) and entertainment for them too (clown, magician, etc). There is no conference fee, you just have to be a member of CHERUBS to attend! You are responsible for your own lodging, food and other travel costs. We are working on discount tickets for the local attractions. I have to say that the San Antonio Tourist Bureau has been AMAZING!!!! They will be sending all of our member info on the conference and San Antonio at no cost to CHERUBS!!! 🙂 So far it looks like there will be about 150 in attendance!!! We have members coming in from Australia, Mexico, Great Britain, Canada and Italy as well!!! This is truly a CHERUBS INTERNATIONAL Conference!!! 🙂 We hope to see you all there!!!

CDH Research Survey Software

CHERUBS is thrilled to announce that the CDH Research Survey Software Company has granted our charity a discount to help our cause! Instead of the $6000 a year that we expected to pay, QuestionPro.com is allowing us to use their software for just $1000 a year – saving our non-profit organization $5000!!! We are so grateful for the assistance! QuestionPro is the top Research Software On-Line – the one we have been comparing all other software to. We didn’t dare dream that we’d be able to do this research so soon, saving so much money!

Thank you QuestioPro for your generousity and for helping CDH families around the world!

Our CDH Research Site programming will begin next week!

Press Release: Charity for Babies Born Without Diaphragms & Lungs Welcomes New Celebrity Spokeswoman, Patsy Pease



Press Release:

CONTACT:
Dawn Williamson *
dawn.williamson@cherubs-cdh.org
919.610.0129

Charity for Babies Born Without Diaphragms & Lungs Welcomes New Celebrity Spokeswoman, Patsy Pease


After struggling since 1995 to bring more awareness to Congenital Diaphragmatic Hernia, a birth defect that affects 1600 babies each year in the U.S., CHERUBS announces their first celebrity spokesperson, actress Patsy Pease.


Raleigh, NC – CHERUBS, a non-profit organization founded to not only help parents of children born with CDH, but to lead the medical community in finding the cause and prevention of this devastating birth defect, is working hard to raise Congenital Diaphragmatic Hernia Awareness.

Founded in 1995 by Dawn Torrence, CHERUBS is the world’s largest CDH organization with over 2600 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Immediately after Shane’s birth, Dawn searched for a support group, but there were none available. After spending hundreds of hours in the hospital’s medical library researching CDH and finding support only from parents she met at the hospital, Dawn felt a great need for a CDH support group.

CHERUBS serves the CDH community without charging parents or medical care providers for it’s services. It receives no grant funding and has no paid employees. Fundraisers help to provide the services that CHERUBS offers, often on a shoe-string budget. Many charities are struggling during this economy and it is especially hard for smaller charities without marketing budgets to compete for media attention to awareness and for research funds. CHERUBS was thrilled when Ms. Pease agreed to become a spokesperson for a cause dear to her heart as well. “Whatever I can do to help will be my pleasure” Pease said.

Ms. Pease’s son was born with Eventration of the Diaphragm, a form of CDH and part of Arthrogryposis. Ms. Pease is well aware of the struggles CDH families face. “My son Russell was born with Arthrogryposis in 1990. He has had 11 surgeries before the age 0f 15. His first was to correct an eventrated diaphragm at 11 hours old. He was given a 10% chance for survival. Part of his multiple contracture and diaphragm problems resulted in Restrictive Lung Disease ( He breathes at 40 % capacity) Despite Russell’s condition he earned a Black Belt in Tae Kwon Do at the age of 12. I was given invaluable advice by one of his surgeons long ago….”Don’t treat him like anything is wrong with him and never do anything for him that he can do for himself”. I watched with tears as he struggled to find his strengths and weaknesses and in turn discovered my own. I thank God for trusting and believing in me to care for my teacher, my inspiration…..my son.”

Eventration of the Diaphragm is a form of CDH that occurs when the weakened muscle of the diaphragm allows organs from the abdominal cavity to move into the chest cavity; but unlike more common types of CDH, the diaphragm remains intact. Arthrogryposis is a rare congenital disorder that is characterized by multiple joint contractures and sometimes includes muscle weakness and fibrosis.

CDH affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Torrence’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems. CDH has affected over a half million babies around the world since 2000.

“I wanted to create an organization to help those parents of children with CDH,” said Torrence. “I know exactly how it feels to be going through everything that they have to deal with and have no one to turn to, and I want them to know that CHERUBS is there for them every step of the way.”

There are more children born each year with CDH than there are children born with Cystic Fibrosis, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH.

“There is still so much research that needs to be done,” said Torrence. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH so that more babies are lost to this birth defect.

In 2009 this birth defect should not still exist, much less still have so many unanswered questions and so little research. We will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found. We work toward saving babies in the future and honoring those we have already lost.

We plan to work on several projects this year including an educational video on Congenital Diaphragmatic Hernia that will be free to families and hospitals. We also just published a book of stories of these children and are in the midst of planning many events, including our CHERUBS Angel Ball in Durham in October and our 2009 International CDH Conference in San Antonio in July.

We are always so busy at CHERUBS and try so hard to bring more attention to this birth defect. Having Patsy on board is such a Godsend. I look forward to working with her to help raise more awareness so that we can bring more research to CDH and more information and support to these families”.

###

About CHERUBS

CHERUBS is an international charity located in North Carolina founded in 1995. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of January 2009, CHERUBS has over 2600 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.

About Patsy Pease

Patsy Pease is best known for playing the character of Kimberly Brady Donovan on “Days of Our Lives” from 1990 to 2008. She is one half of the soap’s supercouple of Kim and Shane (played by Charles Shaunnessy). She has also appeared in “Two Shades of Blue” (1999), “Total Reality” (1997), “The Young and the Restless” (1996), “Hardball” (1994), “Silk Stalkings” (1992), “Space Raisers” (1983), “Remington Steele” (1983), “Trapper John, M.D.” (1983), “Search for Tomorrow” (1979-1982). Ms. Pease has won several Soap Opera Digest Awards. She is a strong advocate for raising awareness of child abuse, giving lectures and speeches on her own personal experiences. She has semi-retired to raise her children and to continue her charity work.

*Special thanks to Rachel Wells at 919 Marketing for writing much of this press release.


Patsy and Russ