Sunday, March 29, 2009

Long Term Support for CDH

One of the new CDH families wrote a blog post last week that really got me thinking. She (rightfully) complained that she was not receiving enough support after bringing home her cherub from the hospital. That feeding issues and therapies were hard and no one was talking about it and she had no where to turn. That the groups she was in just talked about the pregnancy and time immediately after birth and then she was left on her own to go from there. I could feel her frustration and loneliness in her post. I could feel it, because I've been there. And that's what got me thinking.

This mom isn't an active member of CHERUBS. She's one of the new families swayed by drama who've been told to stay away from CHERUBS. Why? Because we're one of the groups standing up against those groups who are hurting families. There are dozens of new and expectant parents who are found through blog searches and "befriended" and "recruited" to join "CDH support groups". New and expectant parents who are at their most vulnerable, already dealing with CDH and in the midst of thier diagnois or grief and caught up in those agendas, drama, slander and the lies told to keep them away from information and support - that they obviously desperately need. It's shameful and it's sickening and it's sad and it breaks my heart that the CDH road is being made harder for families than easier. Those parents and children deserve so much better!

And then I realized we're partly to blame for this as well. We don't post what we offer that much. And we offer a ton - more than all the other CDH organizations put together and for 3 times longer. BUT, we work with 90% of the other CDH organization to make life easier for these families! It's a global group effort through ACDHO and we've helped 1000's of CDH families over the past 14 years.

When my son was born there was NO SUPPORT. No internet, no googling "Congenital Diaphragmatic Hernia", no organizations - nothing. When we bought him home, we had no one to turn to. When were in the hospital we had no one to turn to except one other CDH mom. She was a godsend and I love her like a sister to this day - but she will be the first to tell you that she can only give advice and information about the neonatal period. She lost her son at just over a month old - her experiences are very limited and heart-breaking but she can explain about ECMO and CDH repair and vent weaning and staph infections and pneumonia. But she will tell parents - as she told me when Shane came home - that she doesn't have the experiences to draw accurate advice on how to deal with a CDH baby who lives for a longer time or who does come home. She was all the support I had - and she couldn't help me.

So I struggled on my own - frustrated, alone and crying almost daily because it's completely overwhelming to take care of any new baby - much less one who could stop breathing at any moment or for who feeding is a huge ordeal. Don't get me wrong - I was so BLESSED to bring him home and I knew that - but being home with a sick baby without support was horrible. What I wouldn't have given to have 1 other CDH parent who had walked in my shoes to tell me it was OK to be upset or disappointed. That it was OK to feel frustrated when my cherub wouldn't eat. Or it was OK to cry because we couldn't do the things other parents of healthy children took for granted - like just going to church or shopping around crowds, or not having therapists and nurses in our house all the time, etc. But there was no one.

That's why CHERUBS was founded. Not in memory of one child. Not in some misguided, grief-stricken, angry quest. Not in some popularity contest. Not in some agenda to profit off of sick children. There was only 1 reason why CHERUBS was founded - to help other CDH families so that no one felt alone and every CDH parent had the information and support that they needed - along with advocating for awareness and research.

At CHERUBS parents talk about Long Term issues associated with CDH. Information and advice given by parents who have walked in the same shoes - not from people who have read about it in other people's stories. We don't just focus on birth and CDH repair and getting the babies home. We focus on the whole picture - pregnancy, birth, neonatal and beyond. We have forums for support for feeding issues and developmental delay - things often dealt with for years after coming home. We have forums for older survivors - some of our survivors have graduated high school, college, gotten married and had babies of their own - lives after CDH that is barely charted territory and these survivors especially need support. We also offer support for just the dads and siblings, for grandparents, for other birth defects or genetic issues.

And we offer support to ALL CDH families. Grieving parents know we are ALWAYS there for them, through the deaths and funerals, long after their families and friends have forgotten their cherub's birthday and angelversaries - we still remember. We support those grieving parents who made all decisions - whether they chose to terminate or go to term - whether they chose extensive medical support or letting their child go at birth. You will never see pro-life or pro-choice issues raised at CHERUBS. We offer parents all the information on CDH possible - so that they can make informed decisions. Not all CDH parents have that information and regret the decisions that they make. We are there to offer ALL CDH families support - not to make personal judgments or religious condemnations.

At CHERUBS there is A LOT of support - usually over 100 posts each day on all of these topics!

At CHERUBS we recommend families get support from as many different sources as possible. From as many different CDH groups as possible. We work hard to have their best interests at heart - to do what's right for these children and their families.

No one dealing with CDH ever has to deal with any CDH related issue alone again. And in reaching our goal that we set when founded - CHERUBS is a success. Helping families is our goal and will always be.

Saturday, March 28, 2009

2009 International Congenital Diaphragmatic Hernia Conference



Don't forget to register!

It looks like we'll have over 100 in attendance this year from at least 5 countries! Plus, amazing guest speakers including Meaghan Russell from Boston Children's (who will be also be helping families to participate in CDH Research!) and Kevin Lally from the CDH Study Group to give us all the latest news on CDH research and treatments. Also, leaders from several CDH organizations and sites will be there as well!

There will be round-table discussions for parents of survivors and grieving parents, as well as CDH survivors. Entertainment for the kids, tons of Congenital Diaphragmatic Hernia awareness items and information, a pizza party on the first day and much more! It's going to be an incredible CDH conference - make sure not to miss it!


http://www.cherubsconference.org/





Saturday, March 21, 2009

CDH Knowledge Tests on Facebook

Test your knowledge of Congenital Diaphragmatic Hernia Research and Awareness on Facebook!




How much do you know about Congenital Diaphragmatic Hernia Research?

http://apps.facebook.com/trv-cdh-resear-mwnd/










How much do you know about Congenital Diaphragmatic Hernia Awareness?

http://apps.facebook.com/trv-how-much-d-tvvj









Bought to you by CHERUBS!

Thursday, March 19, 2009

Miracles

"I would rather make mistakes in kindness and compassion than work miracles in unkindness and hardness." ~ Mother Teresa

“The miracle is not that we do this work, but that we are happy to do it.” ~ Mother Teresa

“The only way to live is to accept each minute as an unrepeatable miracle, which is exactly what it is: a miracle and unrepeatable.” - Storm Jameson

“A miracle is an event which creates faith. That is the purpose and nature of miracles. Frauds deceive. An event which creates faith does not deceive: therefore it is not a fraud, but a miracle.” - George Bernard Shaw

“For the truly faithful, no miracle is necessary. For those who doubt, no miracle is sufficient.” - Nancy Gibbs

“Birth is the sudden opening of a window, through which you look out upon a stupendous prospect. For what has happened? A miracle. You have exchanged nothing for the possibility of everything.” - William McNeile Dixon

“Miracles occur naturally as expressions of love. The real miracle is the love that inspires them. In this sense everything that comes from love is a miracle.” - Marie Lloyd

“Learning is the beginning of wealth. Learning is the beginning of health. Learning is the beginning of spirituality. Searching and learning is where the miracle process all begins.” - John Rohn

Videos of Cherubs - Matthew

Videos of Cherubs - Lauren Ansley Bishop

Videos of Cherubs - Skyla Manawa Temaipi

Videos of Cherubs - Mert

Videos of Cherubs - Michaela Munson

CHERUBS IRS Audit

CHERUBS met with an IRS agent this week who audited our books and accounts. We spent 2 days going over every financial detail and all our books and they found we're doing nothing wrong.

On another positive note, the IRS agent got a hefty dose of Congenital Diaphragmatic Hernia Awareness! :)

We appreciate the support and faith of all of our members and the entire CDH community and hope that this slander is finally laid to rest.


“Truth is generally the best vindication against slander” - Abraham Lincoln
“Slander cannot destroy an honest man - when the flood recedes the rock is there” - Chinese proverb
“Slander is the revenge of a coward, and dissimulation his defense” - Author unknown

Sunday, March 15, 2009

Legal Happenings At CHERUBS

Hi Everyone,

I wanted to update you on CHERUBS legal happenings....

CHERUBS had a pro bono attorney for the personal restraining order I had to take out against Elizabeth at Breath of Hope in 2006 I believe. Long story, not going into that as that's not what this post is about.

CHERUBS had 3 pro bono lawyers from 2 law firms helping us on the trademark and a few additional tossing us advice here and there. HUGE help! But 1 law firm doesn't have the manpower to give us anymore and the other is about to take over a much bigger project for us.

So that leaves me to deal with the trademark issue legal stuff alone. And to be honest, I have no clue what I'm doing. The stress of having 1000's of people depend on me and CHERUBS to protect Congenital Diaphragmatic Hernia Awareness is enormous. I don't want to mess this up. I need help. If you know of a trademark attorney who will help us, please let me know. They can be in any state as this is a federal issue. Please help if you can - these babies deserve to have the best representation to protect their rights. I am not that person to do that job, I am not qualified and I will not post that I am a legal expert or I am so intelligent that I don't need a lawyer. I am bound to make some mistakes doing this alone (well, not alone - our Board is a huge help!), but we cannot afford to make mistakes. Taking on a trademark is not a small thing at all. This trademark is a huge ordeal, one that has to be stopped.

So that leads me to another notice. I will be taking down the timeline for a while. I will not be posting about any legal issues. I will no longer be keeping you updated on Elizabeth's attacks or false allegations, slander, filings against CHERUBS with various agencies, etc. If you want updates on the trademark, you can go through the petition site to see the updates at the USPTO. Why, you ask?

For the first 3 years all this was going on, we kept quiet about it. Ignoring it did not help matters, it only enabled her and made her bolder. It got worse, so much worse that the restraining order was filed.

Then we went public, because other CDH parents were now being attacked and Elizabeth was filing accusations to try to have CHERUBS shut down. That was 2 years ago. You all have been pretty updated since.

But now, I am stepping back on the legal stuff and handing it all over to our new 2 pro bono lawyers to deal with. Whatever they deem necessary to do to stop the attacks, they have our blessing. Any court proceedings, filings, government intervention, criminal charges, etc - they have our blessing. 5 years of this is enough. It's time to deal with this all once and for all and let the CDH community have some peace. We can't thank our new lawyers enough, they are angels to help the CDH community this way!!!

And we can get back to supporting families dealing with Congenital Diaphragmatic Hernia and stop dealing with all Elizabeth's drama and attacks. Too many CDH parents were put under the impression that CHERUBS is only about drama and stopping Elizabeth. That couldn't be farther from the truth.... our site is drama free, we offer dozens of free services, the most CDH information on the net and with over 2700 families we offer the most support! :) We've been here for 14 years with only one goal - helping families affected by CDH.

Now, we still have the trademark issue to deal with!!! I am still working on that video and we will release it this week. At the least, it will raise awareness! But we still need a lawyer! If you know a lawyer or you really want to help and just call lawyers and ask them to help us.... we would appreciate it so much!!!

Saturday, March 7, 2009

Update on "Congenital Diaphragmatic Hernia Awareness" Trademark


I'd like to be able to tell you that Breath of Hope, Inc. dropped the trademark on "Congenital Diaphragmatic Hernia Awareness", but that has not happened. I would like to update you on a few developments and projects:
Formal Letter to Breath of Hope, Inc. Requesting End To CDH Awareness Trademark

http://cdhsupport.blogspot.com/2009/02/formal-letter-to-breath-of-hope-inc.html

On February 24, 2009, a formal letter was sent to the Board Members of Breath of Hope, Incorporated. It is our formal attempt to end this trademark issue peacefully and to request that their organization do what is best for all families affected by Congenital Diaphragmatic Hernia.

This is our effort to resolve this particular issue and end this trial and to save the entire CDH Community 2 years of USPTO trial dates and to use our time and resources to better help CDH families.

The trademark trial is continuing, and will go forward, unless Breath of Hope, Inc. decides to resolve this issue.

On March 6, we received an updated response to our amended Petition to Cancel paperwork for the USPTO. Once again, they are claiming that Breath of Hope, Incorporated is the only entity that should be allowed to use the phrase "Congenital Diaphragmatic Hernia Awareness". Once again, Breath of Hope, Inc. is trying to deny CDH families, medical care providers and other organizations from freely raising Congenital Diaphragmatic Hernia Awareness.

Would You Like To Be A Court Witness (by phone)?

We are putting together our list of list of witnesses who will testify that "Congenital Diaphragmatic Hernia Awareness" is a common term. You do not need to testify to anything or talk about anything else. Just that CDH has affected you and you use and hear this term in common use. If you would like to participate, please e-mail me at dawn.williamson@cherubs-cdh.org with your full name, phone number and address. You need to respond by March 12th if you would like to be a witness.

This is an opportunity for all of you who are upset by this trademark to take a legal stand against it in the easiest way possible. You will go down on government record as a witness and you'd be doing this in honor / memory of your cherub (if you don't have a child born with CDH, that's ok! You can still be a witness and stand up for what's right! You would be helping ALL families of babies born with CDH, as well as everyone who has or will ever dealt with any kind of health issues to stop this precedent setting trademark. Can you imagine a world that allows "Cancer Awareness" or "Autism Awareness" or "Heart Defect Awareness" to become trademarked by one greedy corporation, stopping millions of people from raising awareness and research? Please help us in this very important trademark suit by being a witness.

We would like as many of you as possible to join in. Please know that Elizabeth *cannot* contact or harass you about this as that would be witness tampering. Please also know that the court will probably not call every witness listed - so you may or may not be called. Your family, friends, and cherub's medical care givers are welcome to testify as well!



Congenital Diaphragmatic Hernia Awareness Video

We like to put together a video of CDH families to stand up to this Congenital Diaphragmatic Hernia Awareness trademark. I would like *ALL* CDH families to participate! Not only will be this good for standing up to this trademark but for awareness in general. You can view some of the videos sent in at http://www.youtube.com/user/cdhsupport

To participate, send in a video clip just a few seconds long to membership@cherubs-cdh.org Make sure to include your name and your cherub's name! The video should include you, your cherub or your family just standing / sitting and saying "I own Congenital Diaphragmatic Hernia Awareness". Or "We own Congenital Diaphragmatic Hernia Awareness" if there more than one person in the video. Young CDH Survivors - Videos of CDH survivors saying this would be great... especially the little ones looking all cute! :) New Parents - videos of parents saying this in the NICU beside their cherubs would be great. The whole NICU experience and dealing with CDH is what is we're trying to raise awareness about! Expectant Parents - show off that tummy and say it! :) Grieving Families - hold a photo of your cherub and say it or stand at the cemetery or whatever you want to do to get the point across that this is a deadly birth defect and awareness is crucial.

You do not have to be professional to take the video. You don't have to be glammed up or in a studio. Just be yourselves!!! Use any video camera at all, it doesn't have to be perfect quality. The video will include your photos and a few slides about what CDH is. It will also include 1 or 2 slides stating that we are fighting to stop the trademark. CDH families and organizations (those not involved in helping BoH) are invited to participate. Photographs in our photo albums on our site will also be included.

This video will be posted on YouTube, our sites, blogs, Facebook, Myspace, etc. You'll be able to post it yourselves to wherever you'd like as well. This video will also be sent to the Board of Directors at Breath of Hope, Incorporated as a plea to get them to knock off this trademark nonsense.

We'd like to get at least 50 families participating! Deadline to get your video in is March 15! Feel free to post this to your blogs, myspaces, facebooks, etc or send it to other CDH families!

Petition to Stop The Trademark on "Congenital Diaphragmatic Hernia Awareness"


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

Don't forget to sign and forward this to your family and friends. This is also the place to stay updated on court proceedings.


Thank you all for your amazing support for CHERUBS and all CDH organizations, families and medical care providers in dealing with this trademark.

Tuesday, March 3, 2009

2009 Congenital Diaphragmatic Hernia Awareness, Events, Fundraiser and more at CHERUBS

Our latest issue of our newsletter will be out in a few weeks but I wanted to let you know about all the activities we have going on at CHERUBS! 2009 is a very, very busy year here with events going on around the world, including our 2009 International Member Conference in San Antonio, TX in July. I hope to see you all there!

March, 2009

March 16, Texas Bake Sale - Corpus Christi, TX. You can reach Melissa at 361-288-4698. http://txcherubs.wordpress.com/

March 28, Oakland Academy in Portage, MI Spring Carnival fundraiser. You can reach Amy at ame_amers@hotmail.com

Friends of Faith Book Drive - Michigan (but you can participate from anywhere). You can reach Amy at ame_amers@hotmail.com


April, 2009

Michigan JayCee's Event - Contact Darcy for more info or Barb at bwagner@cherubs-cdh.org

CHERUBS UK Pub Crawl - April 11, Melanie Parsons http://www.facebook.com/event.php?sid=5b487216f38310cadf3be1f4321ad462&eid=71341216080

North Carolina Get-Together - in Raleigh, NC. Informal Chuck E. Cheese get-together for local NC families and to help plan the various NC events we have going on! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129 http://nccherubs.wordpress.com/


May, 2009

Grayton's Glory 5K Run - May 9 in Alabama. You can reach Leigh for more information at leigh.creekbaum@ubs.com

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-cdh.org or 919-690-0129

North Carolina Walk for Cherubs - May 17 in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://nccherubs.wordpress.com/

NC Balloon Release for Cherubs - May 17 in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://nccherubs.wordpress.com/

CHERUBS Ebay Auctions - around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


June, 2009

2009 UK Conference - in Great Britain. You can reach Brenda at blane@cherubs-cdh.org or 0800 731 6991. http://www.uk-cherubs.org.uk/

Pennsylvania Get-Together - You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073. http://pacherubs.wordpress.com/


July, 2009

Shelby's Summertime CHERUBS Celebration - July 11 in Indiana, contact Stephanie Olivarez at solivarez@cherubs-cdh.org

2009 International Member Conference - July 22-25, San Antonio, Texas! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsconference.org


August, 2009

Ohio Get-Together - in Columbus, OH. You can reach Tara at thall@cherubs-cdh.org or 614-275-0858. http://cherubs-ohio.wordpress.com/


September, 2009

Jeremiah’s Car Show - in Columbus, Ohio. You can reach Sarah at sdeskins@cherubs-cdh.org or 419-512-3446. http://cherubs-ohio.wordpress.com/


October, 2009

2009 Australia Conference - in Australia. You can reach Danielle at dkessner@cherubs-cdh.org or 03 5135 6999. http://www.cdh.org.au/

New England Get-Together - in Salem, Massachusetts. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182. http://newenglandcherubs.wordpress.com/

Gabe’s Bowl-a-Thon - in Cranston, RI. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182. http://newenglandcherubs.wordpress.com/

CHERUBS Masquerade Angel Ball - October 30, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsangelball.org


December, 2009

National Children’s Memorial Day - December 13, 2009 at 7:00 pm around the world

New England Truffle Sale - in Rhode Island. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182. http://newenglandcherubs.wordpress.com/


January, 2010

Shannon Crawford CDH Spaghetti Dinner - January 16, 2010 in Elizabeth, Pennsylvania. You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073. http://pacherubs.wordpress.com/

Blood Drive in Memory of Shane Torrence - January 28, 2010 in Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://nccherubs.wordpress.com/


February, 2010

Valentine's Day Cherubs Fundraiser - February 14, 2010 around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


April, 2010

CHERUBS Golf Tournament - Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsgolftournament.org


July, 2010

2010 International Member Conference in San Francisco, California. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsconference.org


October, 2010

CHERUBS Masquerade Angel Ball - October 29, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129. http://www.cherubsangelball.org