April 17 is International Day of Congenital Diaphragmatic Hernia Awareness
Narrated by 7-yr-old cherub, Jessica Barry.
Showing posts with label cdh day. Show all posts
Showing posts with label cdh day. Show all posts
Thursday, April 19, 2012
Sunday, April 15, 2012
Governor of New Mexico Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness
The governor of New Mexico has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!! WTG Green family for getting this done in honor of their cherub, Kylee Green!!!! ♥
Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Saturday, April 14, 2012
Governor of Illinois Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness
The Governor of Illinois has proclaimed April 19, 2012 as a Day of Congenital Diaphragmatic Hernia Awareness! Thank you to the Rubenstein family for requesting this proclamation in honor of their cherub, Aidan Rubenstein. His father, Neil Rubenstein, is the Illinois State Representative for CHERUBS and is leading the Chicago Parade of Cherubs on April 19th! We also have the Peoria Parade of Cherubs on April 22nd led by Kristin Aigner in memory of her brother.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness around the world.
Learn more about CDH at http://www.cdhsupport.org
What is CDH?
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness around the world.
Learn more about CDH at http://www.cdhsupport.org
Friday, April 13, 2012
Governor of Idaho Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness
The governor of Idaho has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!! WTG Forney family for getting this done in honor of their cherub, Sean Forney!!!! ♥
Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Saturday, April 7, 2012
CHERUBS Dad Running In San Francisco Marathon to Raise CDH Awareness
Cherub Tate Napers featured in the above Save The Cherubs Facebook Timeline Cover
My wife (Karol Napers), kids (Lexie, Jake and Tate) and I will all be attending this year's conference in San Francisco. When we heard about the conference being in San Francisco, I jokingly said to Karol 'wouldn't it be great if there was a marathon close to San Francisco around then?' So we searched, and this one is right there in the city on the last day of the conference! That was about as perfect timing as anything, a little miracle indeed.
Just some history on my running, a couple of years ago I began running and quickly became addicted. I ran my first marathon in Indianapolis in the fall of 2009. Since then, I have made it a goal to be part of the '50-State Marathon Club' by running a marathon in each of the 50 states. I have now completed a marathon in six states (Indiana, Tennessee, Ohio, Florida, Michigan, and New York). Later this month, I'll be running the Louisville Marathon in Kentucky and then the San Francisco Marathon will be my eighth.
We were introduced to CDH just a few months ago, when our son, Tate, was born. We found out the day before he was born that he had a left side diaphragmatic hernia. He was immediately placed on a ventilator after birth, and had a surgical repair when he was 6 days old. A patch had been placed on his diaphragm. He has done ver well (he's our little miracle baby!), and was able to come home just shy of a month after birth.
When Tate was born with CDH, I always wanted to find a way to weave my running into helping raise awareness for CDH somehow. We talked about starting our own race or fundraising in someway. When I signed up for the San Francisco Marathon, the organizers where partnering with Crowdrise - a volunteer organization that helps with online fundraisers for charity. I signed up to create a "Run For CHERUBS" fundraiser and tied it to the San Francisco Marathon Charities. Below is a direct link to the Run For CHERUBS website, where you can find all the info. This is also where you can go to donate by clicking on the orange "Donate" button. My goal is to raise $2,500.00 for CHERUBS, and we're nearly a quarter of the way there already!
Also, I have included a link below to the overall San Francisco Marathon Crowdrise page. You can see from there that the Run For CHERUBS fundraiser is among the top so far, in fourth place out of about 40 charity fundraisers. It's pretty exciting stuff!
Thank you very much for helping to get the word out about this effort! It's very appreciated!
Thanks!
Dan
Friday, April 6, 2012
Help Support The CDH Awareness Fund
Please help us to raise awareness for babies affected by Congenital Diaphragmatic Hernia by donating to sponsor posters, wings, ribbons and more!
http://www.firstgiving.com/fundraiser/cherubs/cdhawareness
What is CDH?
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness around the world.
April 19th is the International Day of Congenital Diaphragmatic Hernia Awareness. In honor of this day, CDH families and friends are holding events around the world. CHERUBS is sponsoring 7 parades, including a large one in Washington DC that will end on Capitol Hill and a light up the night event in the UK.
For more information on the events, you can visit http://www.cdhbills.org
We are doing our best to raise awareness of CDH and we need your support to keep doing that!
Learn more about CDH at http://www.cdhsupport.org
CDH Awareness Fund – this fund will help raise awareness of Congenital Diaphragmatic Hernia through balloon releases, giving away free CDH ribbon buttons and brochures and other items. It will also cover advertising costs, billboards, video production and much more.
A donation of $4 will sponsor 1 set of wings
A donation of $7 will sponsor 1 CDH Education Poster
A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons
A donation of $100 will sponsor a Balloon Release
A donation of $400 will sponsor 5000 CDH Awareness Brochures
A donation of $3000 will sponsor a billboard advertisement
http://www.firstgiving.com/fundraiser/cherubs/cdhawareness
What is CDH?
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness around the world.
April 19th is the International Day of Congenital Diaphragmatic Hernia Awareness. In honor of this day, CDH families and friends are holding events around the world. CHERUBS is sponsoring 7 parades, including a large one in Washington DC that will end on Capitol Hill and a light up the night event in the UK.
For more information on the events, you can visit http://www.cdhbills.org
We are doing our best to raise awareness of CDH and we need your support to keep doing that!
Learn more about CDH at http://www.cdhsupport.org
CDH Awareness Fund – this fund will help raise awareness of Congenital Diaphragmatic Hernia through balloon releases, giving away free CDH ribbon buttons and brochures and other items. It will also cover advertising costs, billboards, video production and much more.
A donation of $4 will sponsor 1 set of wings
A donation of $7 will sponsor 1 CDH Education Poster
A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons
A donation of $100 will sponsor a Balloon Release
A donation of $400 will sponsor 5000 CDH Awareness Brochures
A donation of $3000 will sponsor a billboard advertisement
Monday, March 12, 2012
CDH Kid's Song - "I'm a Real Live Cherub"
Do you know the CDH Kid's song, "I'm a Real Live Cherub"? It's sung at all of our conferences and parades and it's a great way to teach kids about Congenital Diaphragmatic Hernia in a fun, non-scary way!
Lyrics to "I'm a Real Live Cherub":
I'm a real life cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
The doctor put it all back and here's where he fixed me!
2009 CHERUBS International Congenital Diaphragmatic Hernia Conference
2010 CHERUBS International Congenital Diaphragmatic Hernia Conference
2011 CHERUBS International Congenital Diaphragmatic Hernia Conference
Jaden Jones doing a rap version of the song!
Stay tuned for the kid's CDH book coming soon!!!
Lyrics to "I'm a Real Live Cherub":
I'm a real life cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
The doctor put it all back and here's where he fixed me!
2009 CHERUBS International Congenital Diaphragmatic Hernia Conference
2010 CHERUBS International Congenital Diaphragmatic Hernia Conference
2011 CHERUBS International Congenital Diaphragmatic Hernia Conference
Jaden Jones doing a rap version of the song!
Stay tuned for the kid's CDH book coming soon!!!
Monday, April 19, 2010
April 19, 2010 - "CDH Awareness Day"
CHERUBS hereby declares April 19, 2010 as "CDH Awareness Day" - as today it was granted back to the people it truly belongs to - CDH families and researchers!
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
TTAB Ruling - April 19, 2010
http://tmportal.uspto.gov/external/portal/tow?SRCH=Y&isSubmitted=true&details=&SELECT=US+Serial+No&TEXT=77436855#
Note that the turquoise ribbon and proclamations are included in the application to own a trademark on "Congenital Diaphragmatic Hernia Awareness".
CHERUBS petition to the TTAB Court (supported by several CDH groups and 1000's of families) to cancel the trademark to keep CDH Awareness free for all:
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
Recent response from the TTAB, which caused Breath of Hope to relinquish the trademark.
After 2 long years, Breath of Hope did the right thing:
Today, April 19, 2010, "Congenital Diaphragmatic Hernia Awareness" is given back to the CDH community. Owned by no one, trademarked by no one, a date not specific to any person or organization. While most raise CDH awareness every day, today is the first day in 3 years that we can do so without fear.
Let's all move forward!
----------------------------------------
From BoH's Blog -
"The Senate passed S. Resolution 204 for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day please click here to see this - this was done unanimously on April 14, 2010. Breath of Hope and other organizations have faced fierce opposition but this is proof that good prevails.
Since we started this campaign in 2007, there have been six entities that have started conducting medical research to benefit Congenital Diaphragmatic Hernia. Awareness leads to medical research that will lead to answers and treatments."
Does anyone know of anyone who opposed the day? We know 1000's who opposed the TRADEMARKS on CDH Awareness and CDH Awareness Day and they opposed the use of the proclamations in those trademarks that were used to threaten and harass others. And those who opposed the "ownership" of the day that allowed only select groups to participate. But we don't know anyone who would oppose a day that may bring about CDH Awareness. Did we miss something?
Also.... does anyone know those "6 entities that started their research as a result of this day"? I know of 1 that started thanks to a donation from CDH families in St. Louis on that day... but if we're missing 5 others, someone please let us know so that we can get families to join in on research. We do know of 5 others (and more) that are conducting CDH research - but knowing those researchers, we're sure given the fact that most signed the petition against the trademarks and they were researching CDH long before BoH came into existence... they might be understandably insulted by that statement.
"faced fierce opposition but this is proof that good prevails"... we suppose CHERUBS is the "opposition" because we dared to speak up against the trademarks.
"Good" would be doing something good for the sake of helping others without any other motives, without causing or threatening harm to others. That is most peoples' definition of good anyway.
Will CHERUBS participate in helping with the 2011 bill for the day? Probably not. It's still trademarked. We may however put aside April 19th as a day to celebrate the fact that CDH Awareness is no longer trademarked and free for everyone to use without fear again. 1000's of families and researchers fought for that and it should be celebrated.
Sincerely.... congratulations to BOH on getting the bill passed. We do support all CDH awareness projects, even if we can't / chose not to participate in them. A lot of CDH families worked hard to write letters to get the day passed and it is a fete to have a unanimous vote by our politicians to help these babies. BOH and the families involved should be proud of their accomplishment.
And we do extend an invitation to BOH and all other groups to join in to help with the CDH Research Bill. It is not trademarked. Our only mission is CDH Research and helping these babies.
Sunday, May 17, 2009
Today is the Congenital Diaphragmatic Hernia Day of Prayer and Education
We ask that EVERYONE says a prayer (or make a wish) and tell someone about CDH today! Please take just 5 minutes to help educate people and to pray / wish for the end of this horrible birth defect.
Tell just 1 person about CDH and what it is. Do this in person, through an e-mail, blog post, FB comment... anything. Just tell at least 1 person about congenital diaphragmatic hernia.
7:00 pm, whatever time zone you're in... light a candle... say a prayer (or make a wish)... for all CDH babies and families.
We don't just wish for it or want it - we believe the end of CDH and are working hard to make it happen!
Today is the Congenital Diaphragmatic Hernia Day of Prayer and Education.
http://www.cdhsupport.org/awareness/cdhday.php
1000's of people around the world are joining in today, working together against CDH. CDH families, friends, doctors, nurses, and members of the general public are participating. Many CDH organizations are participating. This day is for ALL those affected by CDH.
It is not our hope that someday CDH will end - Hope is wishing for whatever you want the outcome to be. Faith is knowing and believing that someday CDH will end. We don't need hope - we have faith. Someday the cause and prevention of CDH will be known and no more babies and families will suffer from this horrible birth defect.
Tell just 1 person about CDH and what it is. Do this in person, through an e-mail, blog post, FB comment... anything. Just tell at least 1 person about congenital diaphragmatic hernia.
7:00 pm, whatever time zone you're in... light a candle... say a prayer (or make a wish)... for all CDH babies and families.
We don't just wish for it or want it - we believe the end of CDH and are working hard to make it happen!
Today is the Congenital Diaphragmatic Hernia Day of Prayer and Education.
http://www.cdhsupport.org/awareness/cdhday.php
1000's of people around the world are joining in today, working together against CDH. CDH families, friends, doctors, nurses, and members of the general public are participating. Many CDH organizations are participating. This day is for ALL those affected by CDH.
It is not our hope that someday CDH will end - Hope is wishing for whatever you want the outcome to be. Faith is knowing and believing that someday CDH will end. We don't need hope - we have faith. Someday the cause and prevention of CDH will be known and no more babies and families will suffer from this horrible birth defect.
Monday, May 11, 2009
May 17, 2009 - Congenital Diaphragmatic Hernia Day of Prayer & Education
May 17th is almost here! This day is set aside to say a prayer (or make a wish) for the end of Congenital Diaphragmatic Hernia. CDH is a devastating birth defect that has struck more than half a million babies since 2000. That's a baby every 6 minutes diagnosed with CDH! 50% of these babies do not survive and the cause is not known. More awareness and research is desperately needed!!!!
On May 17th please take a moment to say a prayer (or make a wish) that the cause and prevention of CDH is found. There is power in prayer (and wishes)! And please tell at least 1 person about CDH to educate them about this birth defect. Just 1 person (or more!).
How else can you help?
Ask your church or other group to include info about CDH in their programs for that day. Attend an event. Wear a CDH ribbon, wear a shirt or other logo item. Hand out buttons. Release balloons. Send info to your family and friends. Post on your blogs and web sites. Post on your Facebook or Myspace account. Get more friends to join this event!
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May, 2009 Events
March for Babies – May 16 in San Antonio, TX. Join CHERUBS member Karen Myers as she marches in memory of her children Kaleigh and William and raises awareness and funds for the March of Dimes.
Peyton’s Promise – May 16 in Sea Isle City, NJ to raise money for the Children’s Hospital of Philadelphia CDH Research fund. For more information you can visit http://peytonlaricks.blogs
Michigan Member Bowl-a-Thon - May 17 in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480
Day of Prayer for CDH - May 17 around the world! You can reach Dawn at dawn.williamson@cherubs-cd
North Carolina Get-Together for members of CHERUBS - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cd
North Carolina Balloon Release - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cd
--------------------------
Official Congenital Diaphragmatic Hernia Awareness Ribbon buttons!
http://cdhsupport.blogspot
100 for $10 - that's a lot of CDH Awareness! Great project for May 17th - CDH Day of Prayer and Education!
This is the OFFICIAL Congenital Diaphragmatic Hernia Awareness Ribbon as voted on by CDH families themselves. It is not owned by anyone, there are no trademarks or copyrights to it and it is not used by any other cause. It is the CDH Awareness Ribbon recognized by 1000's of families around the world, Wikipedia and the members of the Alliance of Congenital Diaphragmatic Hernia Organizations, which is a group of dozens of CDH organizations, sites and researchers.
CHERUBS does not make any money off of your orders for buttons, not 1 cent! We just want everyone to raise awareness!!!
You can order other CDH awareness items at http://www.cafepress.com/c
It's all about raising CDH Awareness and hoping for an end to this devastating birth defect!
Thank you, on behalf of all CDH families!
Dawn M. Williamson
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
http://www.cdhresearch.org
3650 Rogers Rd #290, Wake Forest, NC 27587
919-610-0129
Wednesday, April 29, 2009
May 17 - Congenital Diaphragmatic Hernia Day
May 17th is almost here! This day is set aside to say a prayer (or make a wish) for the end of Congenital Diaphragmatic Hernia. CDH is a devastating birth defect that has struck more than half a million babies since 2000. That's a baby every 6 minutes diagnosed with CDH! 50% of these babies do not survive and the cause is not known. More awareness and research is desperately needed!!!!
On May 17th please take a moment to say a prayer (or make a wish) that the cause and prevention of CDH is found. There is power in prayer (and wishes)! And please tell at least 1 person about CDH to educate them about this birth defect. Just 1 person (or more!).
How else can you help?
Ask your church or other group to include info about CDH in their programs for that day. Attend an event. Wear a CDH ribbon, wear a shirt or other logo item. Hand out buttons. Release balloons. Send info to your family and friends. Post on your blogs and web sites. Post on your Facebook or Myspace account. Get more friends to join this event!
----------------------------------------------------------------
May, 2009 Events
Jak’s Cruise for Compassion – May 2 in Fayetteville, Arkansas to raise money for the Jack Ryan Gillham Foundation. For more information, please visit www.jackryangillham.org
Grayton's Glory 5K Run - May 9 in Alabama. You can reach Leigh for more information at leigh.creekbaum@ubs.com
March for Babies – May 16 in San Antonio, TX. Join CHERUBS member Karen Myers as she marches in memory of her children Kaleigh and William and raises awareness and funds for the March of Dimes.
Peyton’s Promise – May 16 in Sea Isle City, NJ to raise money for the Children’s Hospital of Philadelphia CDH Research fund. For more information you can visit http://peytonlaricks.blogs
Michigan Member Bowl-a-Thon - May 17 in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480
Day of Prayer for CDH - May 17 around the world! You can reach Dawn at dawn.williamson@cherubs-cd
North Carolina Get-Together for members of CHERUBS - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cd
North Carolina Balloon Release - May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cd
--------------------------
Official Congenital Diaphragmatic Hernia Awareness Ribbon buttons!
http://cdhsupport.blogspot
100 for $10 - that's a lot of CDH Awareness! Great project for May 17th - CDH Day of Prayer and Education!
This is the OFFICIAL Congenital Diaphragmatic Hernia Awareness Ribbon as voted on by CDH families themselves. It is not owned by anyone, there are no trademarks or copyrights to it and it is not used by any other cause. It is the CDH Awareness Ribbon recognized by 1000's of families around the world, Wikipedia and the members of the Alliance of Congenital Diaphragmatic Hernia Organizations, which is a group of dozens of CDH organizations, sites and researchers.
CHERUBS does not make any money off of your orders for buttons, not 1 cent! We just want everyone to raise awareness!!!
You can order other CDH awareness items at http://www.cafepress.com/c
It's all about raising CDH Awareness and hoping for an end to this devastating birth defect!
Thank you, on behalf of all CDH families!
Dawn M. Williamson
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
http://www.cdhresearch.org
3650 Rogers Rd #290, Wake Forest, NC 27587
919-610-0129
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