Tuesday, September 30, 2008
Congenital Diaphragmatic Hernia Awareness Trademark
Some of you and some family members and friends have been writing to the BoH Board to ask them why they want to own that trademark.... and that's great... because THEY (the board) need to know that CDH families want to know. The problem is, Elizabeth is either blocking these and responding herself or just responding for everyone - and sending some pretty nasty, rude e-mails back to those that write the BoH Board - calling people stupid, ignorant, etc. If this happens to you, don't respond... though it seems she sends several e-mails herself. Just don't get caught up in any arguments or drama and if they are slanderous (which so far they are) please just forward them for our lawyers.
And for the record, based on forwarded e-mails full of slander....
CHERUBS has 501(c)III status - the IRS even sent us a newer letter stating that just a few months ago because I requested one because of the lies being spread. It's in our downloads section.
CHERUBS Board is Active - they are here, posting, you can see them on our site. All but our doctors post there and our doctors are active as well. They are all well aware of this problem we've been having of being attacked by this other organization - and many have signed the petition themselves. Over 100 doctors and nurses have signed.
No one owns awareness of a disease or birth defect - except BoH. It is the ONLY trademark of it's kind - which is why it was not let on the regular register and will not stand on the supplemental register. It keeps being said that the March of Dimes owns the trademark to Prematurity Awareness and this is not true - they own the trademark to Prematurity Awareness DAY - and the MoD board that was notified about the CDH Awareness trademark. I was notified that another organization is now trademarking fundraising phrases to try to prevent other CDH organizations from participating - when those phrases are already used by other causes. Maybe someday soon all CDH organizations will focus on the CDH families instead of juvenile games and popularity contests and deceit. Thankfully there are 8 CDH organizations that do care about the families - these are the organizations backing the end of the trademark - organizations that do not trademark, do not attack other organizations and who do put families first.
On-Line petitions such as the one we are all signing and forwarding is different from a Petition to Cancel - we are doing both. Someone is very confused about the 2.
CHERUBS is not "threatened" nor do we want a "monopoly on CDH".... only people who try to register trademarks want to own monopolies. Especially where CDH is concerned. Especially when their ideas are not even original, but taken from other CDH organizations or other disease / birth defect causes. CHERUBS has never trademarked anything. We do not charge for services. We give our research away freely. Our research is accurate and honest. Our fundraisers are original. We work with other organizations and clinics and always have. 8 CDH organizations worked together on the petition. What is the reasoning behind wanting to own CDH Awareness if not to monopolize it, dictate who can say it, who can raise awareness, funds, research? Especially when said person keeps trying to get our organization removed from search engines, our CHARITY fundraising site taken down and filing false reports with the government to try to get our non-profit status revoked. This person is supposed to be leading a children's charity of her own to help CDH families, instead she keeps hurting them. "Free enterprise" and competition is fine... but CHERUBS has never wanted to nor do we have the time to compete with anyone. In my personal opinion, anyone who wants to compete for anything to do with CDH, including ideas, members, etc.... needs professional help because then it's no longer about helping CDH families and these children, but their own egos. CHERUBS was started before any other CDH groups, competition has never been what we are about - we are about helping families and doing right by these children.
So my point is - don't believe the lies that you hear, because they are lies and slanderous. Don't let her rude responses stop you from e-mailing the BoH Board. If she responds, you don't have to read it. You can delete it, ignore it, forward it, or read it and laugh at it - but don't get upset because that's the goal - to upset and intimidate and bully CDH families. Don't give anyone the power to do that.
Monday, September 29, 2008
Congenital Diaphragmatic Hernia Awareness Shirts On Sale!
We have several different shirts for sale! These are shirts that we ordered many years ago that have been sitting around here so we thought we'd put them to use raising awareness by selling them EXTREMELY cheaply! Just $3 for kids shirts and $5 for adult shirts! They have our old name and site address on them, but other than that, they are great! They make WONDERFUL holiday gifts! Pre-shrunk, cotton shirts. VERY, VERY limited adult shirts left so orders are on a first come, first serve basis!
(the graphic says "Proud Member" but the t-shirts say "I Believe In CHERUBS")
"I Believe In CHERUBS" Adult T-Shirts
In pink or blue
$5.00 each
$3.00 each
"Grandma's Little Cherub" Kids T-Shirts
$3.00 each
"Grandpa's Little Cherub" Kids T-Shirts
$3.00 each
$5.00 each
Monday, September 22, 2008
Ornaments, Yearbook, Calendar, Cookbooks, Book and more! CDH Research Fundraisers!
2009 Calendar - submit your cherub's name, photo and date(s) to membership@cherubs-cdh.org
2008 Yearbook - submit your cherub's name and date(s) to membership@cherubs-cdh.org. You are encouraged to submit FAMILY PHOTOGRAPHS but you can submit just a photo of your cherub. Grieving parents can submit photos of your family holding a portrait of your cherub. The purpose of our yearbook is to see how cherubs and siblings grow through the years so we would really like to include everyone. If you don't submit a photo then we will use the one on our site in our photo album.
Cooking With Cherubs Vol. II - details at http://cdhsupport.blogspot.com/2008/09/cooking-with-cherubs-vol-iii-cdh.html Anyone can participate!!
Stories of Cherubs - submit your cherub's name, photo, story and date(s) to membership@cherubs-cdh.org
2008 Holiday Ornaments - submit your child's drawing and your cherub's name and date(s) to membership@cherubs-cdh.org Siblings are encouraged to participate! Any drawing of an angel or cherub is suitable and all drawings will posted on cafepress! One drawing will be chosen to go on our holiday cards!
Submission deadlines for all fundraisers is October 15! You must be a member to participate in the fundraisers, except for the cookbook (anyone can contribute a recipe!)
All items will be available by November 30th on our cafepress store: http://www.cafepress.com/cherubs
We have 1000's of CDH Awareness and Fundraising items on our store so go check it out if you haven't already!
Congenital Diaphragmatic Hernia Research - YOU CAN HELP!
CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatement of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.
With 2500 members, all of us devastated by CDH and we have the chance to DO SOMETHING to help find the cause and prevention of CDH.... let's do this!!! Come on everyone, we have the world's largest CDH database - the most CDH babies with the most information. The CDH Study Group is amazing. They are studying the surgical treatment of CDH. But NO ONE BUT CHERUBS is studying the possible causes of CDH with so many patients as we are. Are we going to sit on this information and do nothing when we could really make a difference here? Or are we going to band together to get this research done? :)
A fund has been set up for raise money for CDH Awareness at
http://www.firstgiving.com/cdhresearch
You can donate there in honor / memory of a cherub or through PayPal at http://www.cdhresearch.org Or click the donate button below:
This fundraising page is to help raise funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers - offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $500 per month. Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $6000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.
http://www.cdhresearch.org
This web site is a project of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH.
CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatment of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.
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 1 in every 2500 babies, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.
Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year - in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) - yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!
The cause of Congenital Diaphragmatic Hernia is not yet known.
50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.
Looking for support dealing with Congenital Diaphragmatic Hernia? Make sure to visit CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Like the CDH logo or want to purchase some CDH Awareness items? Make sure to visit CHERUBS Store where you can buy 100's of items with the Official Congenital Diaphragmatic Hernia Awareness Ribbon, the CDH logo, the CDH Anatomy shirt and much more.
Stories of Cherubs Vol. II - Submit your cherub's story by October 15th!
To participate you must be a member of CHERUBS (membership is FREE - http://www.cdhsupport.org).
You can e-mail your story to membership@cherubs-cdh.org with your cherub's name, photo and date(s). Please put Stories of Cherubs in the subject line.
Books will be available by November 30th!
Cooking With Cherubs Vol. III - CDH Fundraising Cookbook
Please include the following:
Name
State / Country
Name of Recipe
Ingredients
Directions
Cherub's Name
In Honor / Memory
Please e-mail your recipes to the following.
Breads & Rolls - Kim Switzer (kswitzer@cherubs-cdh.org)
Appetizers & Beverages - Stephanie Olivarez (solivarez@cherubs-cdh.org)
Soups, Salads & Vegetables - Elaine Moats (emoats@cherubs-cdh.org)
Main Dishes & Casseroles & Crockpot Recipes - Elaine Moats (emoats@cherubs-cdh.org)
Meat, Poultry & Seafood- Sharon Knott (sknott@cherubs-cdh.org)
Cakes, Cookies & Candy - Corin Nava (cnava@cherubs-cdh.org)
Pies, Pasty & Other Desserts- Bethany Gillham (bethanygillham@hotmail.com )
Hypoallergenic Recipes - Barb Wagner (bwagner@cherubs-cdh.org)
This & That (Misc) - Barb Wagner (bwagner@cherubs-cdh.org)
Household Hints - Barb Wagner (bwagner@cherubs-cdh.org)
Tuesday, September 2, 2008
CDH Research Fund
http://www.firstgiving.com/cdhresearch
You can donate there in honor / memory of a cherub or through PayPal at http://www.cdhresearch.org Or click the donate button below:
This fundraising page is to help raise funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers - offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $500 per month. Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $6000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.
http://www.cdhresearch.org
This web site is a project of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH.
CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatment of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.
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 1 in every 2500 babies, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.
Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year - in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) - yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!
The cause of Congenital Diaphragmatic Hernia is not yet known.
50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.
Looking for support dealing with Congenital Diaphragmatic Hernia? Make sure to visit CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Like the CDH logo or want to purchase some CDH Awareness items? Make sure to visit CHERUBS Store where you can buy 100's of items with the Official Congenital Diaphragmatic Hernia Awareness Ribbon, the CDH logo, the CDH Anatomy shirt and much more.
Congenital Diaphragmatic Hernia Awareness Trademark
http://www.firstgiving.com/cdhawarenesstrademark
This fundraising page has been started to pay for the USPTO trademark opposition fees of $300. This page has been started because general donations made to a charity should not be used to fight such legal battles that should not have to be fought in the first place. CHERUBS refuses to use donations made in good faith in honor or in memory of a child to combat a trademark application filed to prevent all CDH families from raising Congenital Diaphragmatic Hernia Awareness freely. Our lawyer is working against this trademark pro bono.
2008 Has Been A Busy Year At CHERUBS!
So far in 2008, we've done a lot at CHERUBS:
CDH Awareness Video2008 International Member Conference was a huge success!
CDH Street Signs Awareness Program begun
CHERUBS Facebook Goodsearch Group
Fight Against Congenital Diaphragmatic Hernia at Change.org
CHERUBS is chosen out of 55,000 charities to be goodsearch.com charity of the day
Customizable CDH Awareness Ribbon is created
Let Me Tell You About CDH Logo is created
Ask Me About CDH Logo is created
Angel Ball was an amazing event
Golf Tournament was so much fun
ATV Rally
CHERUBS on Zazzle.com
CHERUBS Random Acts of Kindness Cards
New CDH Logo For Teenagers
Ohio Member Picnic once again successful!
Congenital Diaphragmatic Hernia Research Site
Congenital Diaphragmatic Hernia Educational Items added to cafepress
Anatomy of CDH graphics freely distrubted
Personalized CDH Awareness Ribbons Items added to cafepress Opposition to Trademark on "Congenital Diaphragmatic Hernia Awareness"
"CDH Awareness Platform" for Beauty Pageants started
"Take A Stand Against CDH" campaign started
Oklahoma City, OK newspaper "The Oklahoman" article
Raleigh / Durham / Chapel Hill, NC News 14 television interview
Durham, NC "Herald-Sun" newspaper article
Rochester, IN newspaper article
National ATV Magazine article
Carolina News Wire press release
3 more Advisory Committee additions
1 more Volunteer Coordinator
New Volunteer Software Installed
Also coming in 2008:
Stopping Trademark on "Congenital Diaphragmatic Hernia Awareness"
2008 Conference Speech Videos
2008 CDH Research Survery Results
CHERUBS name changed to CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
"Cooking with Cherubs" Cookbook Vol.III
"Stories of Cherubs" Vol. II
2009 Cherubs Calendar
Happy Birthday Jeremiah Car Show
Take A Stand Against CDH
http://www.youtube.com/watch?v=JtOElZcUyVM
Please forward, post, add to your profile, site or blog.... feel free to use this video anywhere to raise awareness of CDH
Thank you!
Dawn
http://www.cdhsupport.org
Coming Soon - Congenital Diaphragmatic Hernia R
CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatement of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.
Customized CDH Awareness Ribbon Items at Cafepress!
We are taking our customized Official Congenital Diaphragmatic Hernia Awareness Ribbon graphics and putting them on cafepress so families can raise awareness in honor / memory of their cherubs! If you would like a free personalized CDH Awareness Ribbon, please send your child's photo, name and date(s) to membership@cherubs-cdh.org with "CDH Awareness Ribbon" in the subject line.
We have over 75 more ribbons to add with requests coming in daily but here are a few already up on our store at http://www.cafepress.com/cherubs/5842791
Click on the thumbnails below to view sharper images.
New Congenital Diaphragmatic Hernia Education Items!
http://www.cafepress.com/cherubs/4814131
CDH & Cherubs in the Media!
Oklahoma City, OK newspaper "The Oklahoman" with Dawn, LaneyKate Daniels & family and the CDH Study Group (September, 2008) - http://newsok.com/parents-of-children-with-congenital-diaphragmatic-hernia-cdh-warn-world/article/3290587
Raleigh / Durham / Chapel Hill, NC News 14 television interview with Dawn (July, 2008)- http://news14.com/content/local_news/triangle/597536/group-brings-attention-to-disease/Default.aspx
Children's Hospital, Alabama with Caden Parker (July, 2008) - Radio Telephone for Children's Hospital
Durham, NC "Herald-Sun" newspaper article on CHERUBS Angel Ball (July, 2008) - http://heraldsun.southernheadlines.com/features/columns/ray/104-976419.cfm
Middleton, OH "Middleton Journal" newspaper articles on Henry English (June, 2008) - http://www.middletownjournal.com/news/content/oh/story/news/local/2008/06/01/mj060108mccrabbhenry_a1.html
and http://www.middletownjournal.com/n/content/oh/story/news/local/2008/06/01/mj060108mccrabbhenry_inside.html
Arkansas, Jack Ryan Gillham Foundation in the local paper and TV (July, 2008) - http://www.4029tv.com/video/16851917/index.html and http://www.nwarktimes.com/adg/News/230536/
Carolina News Wire press release (July, 2008) - http://carolinanewswire.com/news/News.cgi?database=001news.db&command=viewone&id=262&op=t
Plus several more articles and interviews that will be out soon!
Stories of Cherubs Vol. II
"Stories of Cherubs Vol. II" coming out in time for the holidays! To submit your child's story you must be a member of CHERUBS & give publishing permission on your membership form. Then just e-mail your story and photo to membership@cherubs-cdh.org with your cherub's name and date(s) in the subject line. Submission deadline is October 15th!
You can still purchase "Stories of Cherubs" on our cafepress store at: http://www.cafepress.com/cherubs.91971767
Over 500 pages and 300 stories and photos of children born with Congenital Diaphragmatic Hernia. Families tell tales of what life is like to have a child with CDH and to sometimes lose those children. Heartfelt and honest, these stories are a wonderful tribute to cherubs and their families. This book is must have for family members and friends who struggle to understand CDH as well as wonderful guidebook for new and expectant CDH parents.