Friday, June 26, 2009

CDH Awareness Ribbon Car Magnets


Back in 2007 CHERUBS introduced the world to Congenital Diaphragmatic Hernia Awareness car magnets. We thought we would post these again so that when you are traveling around on your summer vacations you can raise awareness on the road! :)

Throwing a baby shower or attending one? Expecting a baby? Register for a Diaper Cake and CHERUBS will receive 25% as a donation!


http://diapersmakethecake.com/


If you know someone who is expecting or if you're expecting yourself, diapers make a great cake!!! The adorable, creative and useful diaper cakes are amazing!!! They make great gifts for any expectant mom and 25% of the profits of your order are donated to a great cause! Just tell them you want your cake to benefit CHERUBS! Not only are you raising funds to help us help CDH families, you're raising awareness as well!

Thank you so much to "Diapers Make The Cake" for their generosity!!!!

Thursday, June 25, 2009

"National Congenital Diaphragmatic Hernia Awareness Day" TM ?

Trademarked? It would seem not. It seems there is hope for ALL CDH parents and organizations to be able to raise awareness on a specific day without harassment or being threatened or sued. "Congenital Diaphragmatic Hernia Awareness Day" is trademarked... but "National Congenital Diaphragmatic Hernia Awareness Day" is not and is free to use by everyone!!! At least at this moment this is written... tomorrow it may be trademarked since we have dared to post that phrase.

But according to a U.S. Senator, Mr. Vitter from Louisiana (not without great controversy himself), this resolution "encourages the people of the United States and interested groups to support National Congenital Diaphragmatic Hernia Awareness Day through appropriate ceremonies and activities, to promote public awareness of the congenital diaphragmatic hernia birth defect, and to foster understanding of the impact of the disease on patients and their families." It does not mention 1 group or that U.S. citizens can only participate with written permission from 1 person or corporation after paying the appropriate fees.

Perhaps, finally, the patients, families and medical care givers who deal with CDH every day will now have an opportunity to raise awareness freely. As long as we put that word, "National" in there. Or until our trademark lawyers end this insanity once and for all.

SENATE RESOLUTION 204--DESIGNATING MARCH 31, 2010, AS ``NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY'' -- (Senate - June 24, 2009)
[Page: S7013]  GPO's PDF

---

Mr. VITTER submitted the following resolution; which was referred to the Committee on the Judiciary:

S. Res. 204

Whereas the congenital diaphragmatic hernia birth defect is one of the most prevalent, life-threatening birth defects in the United States;

Whereas the congenital diaphragmatic hernia birth defect is a severe, often deadly birth defect that has a devastating impact, in both human and economic terms, affecting equally people of all races, sexes, nationalities, geographic locations, and income levels;

Whereas the congenital diaphragmatic hernia birth defect occurs in 1 in every 2,000 live births in the United States and accounts for 8 percent of all major congenital anomalies;

Whereas, in 2004, there were approximately 4,115,590 live births in the United States, and in approximately 1,800 of those live births, the congenital diaphragmatic hernia birth defect occurred, causing countless additional friends, loved ones, spouses, and caregivers to shoulder the physical, emotional, and financial burdens the congenital diaphragmatic hernia birth defect causes;

Whereas there is no genetic indicator or any other indicator available to predict the occurrence of the congenital diaphragmatic hernia birth defect, other than through the performance of an ultrasound during pregnancy;

Whereas there is no consistent treatment or cure for the congenital diaphragmatic hernia birth defect;

Whereas the congenital diaphragmatic hernia birth defect is a leading cause of neonatal death in the United States;

Whereas 50 percent of the patients who do survive the congenital diaphragmatic hernia birth defect have residual health issues, resulting in a severe strain on pediatric medical resources and on the delivery of health care services in the United States;

Whereas proactive diagnosis and the appropriate management and care of fetuses afflicted with the congenital diaphragmatic hernia birth defect minimize the incidence of emergency situations resulting from the birth defect and dramatically improve survival rates among people with the birth defect;

Whereas neonatal medical care is one of the most expensive types of medical care provided in the United States and patients with the congenital diaphragmatic hernia birth defect stay in intensive care for approximately 60 to 90 days, costing millions of dollars, utilizing blood from local blood banks, and requiring the most technically advanced medical care;

Whereas the congenital diaphragmatic hernia birth defect is a birth defect that causes damage to the lungs and the cardiovascular system;

Whereas patients with the congenital diaphragmatic hernia birth defect may have long-term health issues such as respiratory insufficiency, gastroesophageal reflux, poor growth, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities;

Whereas the severity of the symptoms and outcomes of the congenital diaphragmatic hernia birth defect and the limited public awareness of the birth defect cause many patients to receive substandard care, to forego regular visits to physicians, and not to receive good health or therapeutic management that would help avoid serious complications in the future, compromising the quality of life of those patients;

Whereas people suffering from chronic, life-threatening diseases and birth defects, similar to the congenital diaphragmatic hernia birth defect, and family members of those people are predisposed to depression and the resulting consequences of depression because of anxiety over the possible pain, suffering, and premature death that people with such diseases and birth defects may face;

Whereas the Senate and taxpayers of the United States want treatments and cures for disease and hope to see results from investments in research conducted by the National Institutes of Health and from initiatives such as the National Institutes of Health Roadmap to the Future;

Whereas the congenital diaphragmatic hernia birth defect is an example of how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate therapeutic interventions that directly benefit the people and

[Page: S7014]  GPO's PDF
families suffering from the congenital diaphragmatic hernia birth defect;

Whereas collaboration, technological innovation, scientific momentum, and public-private partnerships can save billions of Federal dollars under Medicare, Medicaid, and other programs for therapies, and early intervention will increase survival rates among people suffering from the congenital diaphragmatic hernia birth defect;

Whereas improvements in diagnostic technology, the expansion of scientific knowledge, and better management of care for patients with the congenital diaphragmatic hernia birth defect already have increased survival rates in some cases;

Whereas there is still a need for more research and increased awareness of the congenital diaphragmatic hernia birth defect and for an increase in funding for that research in order to provide a better quality of life to survivors of the congenital diaphragmatic hernia birth defect, and more optimism for the families and health care professionals who work with children with the birth defect;

Whereas there are thousands of volunteers nationwide dedicated to expanding research, fostering public awareness and understanding, educating patients and their families about the congenital diaphragmatic hernia birth defect to improve their treatment and care, providing appropriate moral support, and encouraging people to become organ donors; and

Whereas volunteers engage in an annual national awareness event held on March 31, making that day an appropriate time to recognize National Congenital Diaphragmatic Hernia Awareness Day: Now, therefore, be it

Resolved, That the Senate--

(1) designates March 31, 2010, as ``National Congenital Diaphragmatic Hernia Awareness Day'';

(2) supports the goals and ideals of a national day to raise public awareness and understanding of the congenital diaphragmatic hernia birth defect;

(3) recognizes the need for additional research into a cure for the congenital diaphragmatic hernia birth defect; and

(4) encourages the people of the United States and interested groups to support National Congenital Diaphragmatic Hernia Awareness Day through appropriate ceremonies and activities, to promote public awareness of the congenital diaphragmatic hernia birth defect, and to foster understanding of the impact of the disease on patients and their families.

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

In theory, a "National Congenital Diaphragmatic Hernia Awareness Day" would a wonderful step for all those who deal with CDH. Let's hope that in reality it is a POSITIVE step for ALL. Let's keep this Congressional Resolution in our prayers please... that it will pass and that it will truly be for ALL CDH families and the public. Our babies deserve that.


Sunday, June 21, 2009

CHERUBS 2009 International Member Conference



Above video from our CHERUBS 2008 International Member Conference for families affected by Congenital Diaphragmatic Hernia (CDH)




CHERUBS 2009 International Member Conference
San Antonio, TX
July 23-25, 2009



For information on this year's conference, visit our site at http://www.cdhconference.org


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 this year are:

Pamela Lally, MD and Kevin Lally, MD (The University of Texas, Houston, TX) will discuss the International CDH Study Group

Meaghan Russell and Dr. Mauro Longoni (MassGeneral CDH Clinic, Boston, MA) will discuss Genetic Research Into CDH

Daryl Scott, MD and David Pearson, MD (Baylor College of Medicine, Houston, TX) will discuss "Genes for CDH: Arrays, Mice and Humans"

The Holiday Inn Select San Antonio Airport
77 NE Loop 410
San Antonio, TX 78216
210-349-9900

http://www.hisairport.com

CHERUBS Hotel Room Rate is $89.00
CHERUBS Hotel Room Rate + Breakfast for 2 adults is $97.00

CHERUBS does not charge a fee to attend.
Families must provide their own lodging, food and other travel expenses.

You must be a member of CHERUBS to attend.

CHERUBS 2008 CDH Conference Guest Speakers - Meaghann Russell, MPH and Mauro Longoni, MD

CHERUBS 2008 International Member Conference for families affected by Congenital Diaphragmatic Hernia.

Meaghann Russell, MPH and Mauro Longoni, MD (MassGeneral CDH Clinic, Boston, MA) speech on CDH and Genetics.

This only includes the speech. This does not include questions, comments or dialogue with members (you have to attend our conference to hear and participate in that!).


Part 1



Part 2



Part 3



Part 4



Part 5



Part 6

For information on this year's conference you can visit http://www.cherubsconference.org

For information on CHERUBS and CDH please visit http://www.cdhsupport.org

CHERUBS 2008 CDH Conference Guest Speakers - Priscilla Chiu, MD

CHERUBS 2008 International Member Conference for families affected by Congenital Diaphragmatic Hernia.

Dr. Priscilla Chiu's (Sick Childrens, Toronto, Canada) speech on The Surgical Repair of CDH

This only includes the speech. This does not include questions, comments or dialogue with members (you have to attend our conference to hear and participate in that!).


Part 1



Part 2



Part 3



Part 4

For information on this year's conference you can visit http://www.cherubsconference.org

For information on CHERUBS and CDH please visit http://www.cdhsupport.org

CHERUBS 2008 CDH Conference Guest Speaker - Brenda Slavin, RN

CHERUBS 2008 International Member Conference for families affected by Congenital Diaphragmatic Hernia.

Brenda Slavin, RN (Children's National Medical Center, Washington DC) speech on "Intensive Care Unit and Nursing Care".

This only includes the speech. This does not include questions, comments or dialogue with members (you have to attend our conference to hear and participate in that!).


Part 1



Part 2



Part 3



Part 4

For information on this year's conference you can visit http://www.cherubsconference.org

For information on CHERUBS and CDH please visit http://www.cdhsupport.org

Friday, June 5, 2009

CDH Superhero Logo Items at Cafepress


Now available on cafepress!!! CHERUBS CDH Superhero logo items. Brights for boys, pastels for girls, these are great for CDH patients, family members, doctors, nurses and anyone who has joined in the fight against Congential Diaphragmatic Hernia!!! Onesies, baby bibs, adult shirts and sweatshirts, kids sizes, pet items, household items and more available!

http://www.cafepress.com/cherubs/6750924

With the all the stars, these are great items for the Fourth of July!!!

The Latest in Congenital Diaphragmatic Hernia Research

Below are just a few of the abstracts presented at the 2009 APSA Conference. We were fortunate enough to be able to attend as this new research data was presented. And equally as fortunate to be able to talk to many of the doctors who conducted this research.

As you read the following abstracts please remember that every CDH baby is different. This information is posted for education purposes only and does not reflect the potential outcome of any specific CDH case.

Click on the pages to enlarge them.


The Effect of Prenatal Diagnosis On The Contemporary Outcome of Congenital Diaphragmatic Hernia




Outcome Following Muscle Fap Versus Prosthetic Patch Repair for Large Diaphragmatic Hernias



Patch Repair Is Associated With Significant Morbidity and Mortality In Infants With Congenital Diaphragmatic Hernia (CDH)




Establishment of Pre-Treatment Blood Gas Targets Improves Survival In Infants With Congenital Diaphragmatic Hernia (CDH)



Prenatal Pulmonary Hypertension Index (PPHI): Novel Prenatal Predictor of Several Postnatal Pulmonary Artery Hypertension In Congenital Diaphragmatic Hernia



Long-Term Outcomes In 93 Survivors of Congenital Diaphragmatic Hernia (CDH)

Small Update on Congenital Diaphragmatic Hernia Awareness Trademark



Because CHERUBS is fighting against this trademark on behalf of ALL CDH families and those who care about these babies, we are updating you on a development:

Breath of Hope has retained an attorney to fight to own the trademark "Congenital Diaphragmatic Hernia Awareness"

FYI, CHERUBS attorneys are *pro bono" - not a dime is used of our donations to fight this horrible trademark that inhibits CDH Awareness.

BoH has been asked to remove this trademark and allow all CDH families and researchers to raise awareness freely. No response, except to file another trademark and now hire an attorney.

CDH Awareness belongs to the families and researchers, not a corporation that uses the trademark to attack other charities and CDH parents and that forces people to get "permission" and pay fees to say a common phrase we all use every day.

Agree that this is wrong? Please sign the petition. Please tell Breath of Hope, Inc and Elizabeth Doyle-Propst to stop using this phrase as a business slogan to profit off of and give it back to the CDH families where it belongs.

http://www.ipetitions.com/petition/cdhawareness/index.html

Wednesday, June 3, 2009

Please support CHERUBS Australia in Run Melbourne!


Please support CHERUBS Australia in Run Melbourne!

http://runmelbourne.everydayhero.com.au/cherubs_australia_organisation

29 May 09 10:31 AM
Posted by Margaret Polacska

Congenital diaphragmatic hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes one in every 2,500 babies, yet very few people have ever heard of CDH.

Fifty percent of babies diagnosed with CDH do not survive and the babies who do survive surgical repair may grow up facing many health problems, minor or major, so ongoing support of grieving and surviving families is essential.

The Friends of CHERUBS team is walking and running in Run Melbourne on 28th June to raise funds for the CHERUBS Australia Annual Forum (CAAF) 2009. This is an important forum that brings together CDH families with medical professionals to provide access to information, counselling and parent-to-parent matching for CDH families.

Please help us raise funds to facilitate this important event and give CDH families valuable support by donating generously.
CHERUBS Australia Organisation
ABN: 60 131 315 145
www.cdh.org.au
fundraising@cdh.org.au

CHERUBS Australia is a sister organization to CHERUBS, with their own non-profit status, membership, site and more. We are so very, very proud of all that they do!!! Please support them in this event!

CDH Research - statistic differences and giving facts to families

One of the big topics of conversation at the APSA event in correlation with CDH is the huge discrepancy of "facts" posted on the internet. It's a cause of great concern to CHERUBS and many pediatric surgeons - yes, they do read CDH sites and blogs and they keep up with ALL happenings in the CDH world!

There are literally 100's of CDH Blogs and sites on the internet now. The awareness of CDH that they raise is staggering!!! The internet has done so much for CDH awareness and support since the first CDH site (CHERUBS) back in 1997. But with posting CDH information, comes a responsibility.

Many, many CDH parents post just their stories about CDH.... tributes to their sons and daughters. This is wonderful! But please, please post a disclaimer that every CDH child is different. This is so very important for expectant and new CDH parents to know. No 2 CDH patients are alike. They are CDH snowflakes. Whether your child survived or is an angel now... if you post your story, please post that each child is different. It is wonderful and admirable to want to give others hope - but hope without facts is cruel. That is not being negative - that is being honest. Every CDH parent should have all the information and facts needed to make the best decisions for their children.

Another misnomer is the "lung function" fable. Lung function is only a part of the many, many factors that contribute to a child's survival or death at the hands of Congenital Diaphragmatic Hernia. Head to lung ratio is used in research and yes, you'll read a lot of articles about head to lung ratio in correlation with CDH - but anyone who tells you that that is the deciding factor on whether your child survives or not is extremely uneducated about CDH. Any CDH surgeon, researcher or other care giver will tell you that most deaths are due to ECMO complications, sepsis, kidney failure, heart failure and many other factors. The best lung function in the world does not protect against those complications. Proper hand-washing and a sterile environment while in the hospital plays a bigger role in this than lung function. However, lung function does dictate when a child comes off ECMO, ventilators and oxygen. Parents should be aware of ALL facts and pieces of the CDH puzzle.

Another big topic is the survival rate of CDH. Some sites are posting 60% and 70% survival rates and crediting this data to research articles. This is not how survival rates work. Those articles only include the babies that were not miscarried, terminated, stillborn or who died before transport to their hospitals. Often, they do not include the worst cases - which they denied treatment to. Most CDH research studies done by hospitals include only those cases that were admitted to them. This tips the survival scales drasitically. The OVERALL CDH survival rate is still 50%. Those sites posting differently are either very ill-informed or wanting to tip the scales to give hope rather than facts.

Most importantly, get your facts from a reliable source. A CDH reseach center, a CDH researcher or at least someone with a medical degree with experience with CDH. "Research" through Google is not research. Quoting others research is not "research". It's playing with the emotions of CDH parents and it's wrong. Most of the misinformation is coming from 2 or 3 groups... given to parents who then post it and more parents read it and post it and it then becomes CDH propaganda rather than fact. Rather than post misinformation just to be argumentative.... take the time to learn the facts like CHERUBS does. Like most other CDH groups and sites do. Because it's not about who is right - it's about what is right for CDH families.

Where does CHERUBS get our information? We've been researching for 16 years. Not "googling" but actually getting our hands dirty and spending 1000's of hours in medical research libraries. We also have Medical Advisors on our board - including some of the world's top CDH researchers. Not to mention our CDH Research Studies that we started in 1997. We never quote just 1 medical journal article as our end-all, be-all statistics. We never align ourselves with the research of just 1 hospital. We are dedicated to CDH research - to conducting it, advocating for it, participating in it and bringing correct information to CDH families. Our statistics are build on actual research and years of experience, AND correlation with CDH researchers.

Now, I need to say that all the hospitals and sites in ACDHO follow ethics and post full information. All the hospital work hard to give accurate, reliable information and their research efforts are invaluable. All the sites and non-profits in ACDHO abide rules of ethical conduct and do not post false research data or give medical advice to CDH families. If you want data to post on your sites or blogs - please go to them.

To new and expectant CDH families... read, read, read!!! Read as many stories as possible, read as much research as possible, get as many facts as possible. But be very discerning about who and what you believe along this CDH journey. These days, anyone can write a blog, post a story, start a non-profit or through out some statistics. There is so much misinformation out there... take the time to find the right information!

We learned so much at the APSA conference and talking to CDH researchers. CHERUBS has been so concerned about all the misinformation on the web for a few years now. It was disheartening to learn that we are not the only ones very concerned about this. This has become a real problem and it is hurting CDH families.

Let's all work together to give families affected by Congenital Diaphragmatic Hernia the very best information possible. CDH is hard enough, they do not need to wade through misinformation or read 1 or 2 stories and think their stories will be the same. There is no such thing as too much information, research or support!