CHERUBS New CDH Family Support Fund

CDH Family Support Fund – this fund covers all support services, including our web sites, newsletters, conferences, New Member Packets, get-togethers and other general operating costs. CHERUBS does a lot for CDH families and the CDH community and we incur quite a few costs during so. Just 1 newsletter mailing is now over $3000 for printing and posting with so many members. Our conferences are also expensive. Our monthly expenses are several hundred dollars for ink, postage, web site hosting fees, fax number, etc. It takes a lot to fund an organization with almost 3000 members. Remember, no one at CHERUBS gets paid and we have no office so every penny directly helps CDH families. And all of our services are FREE so we do charge membership fees. Only 2% of our members donate annually so we depend on public donations quite a bit. And the occasional grant as well.

  • $1 will cover 1 2-pocket folder
  • $1 will cover 1 copy of our Parent Reference Guide
  • $5 will cover 1 newsletter printing and US postage
  • $10 will cover 1 New Member Packet
  • $50 will cover our annual non-profit state registration fee
  • $50 will cover envelope costs for 1 year
  • $50 will cover our volunteer software for 1 month
  • $100 will cover staples, paper clips, glue, etc for 1 year
  • $100 will sponsor 1 hospital with CDH info for 1 year
  • $125 will cover web site hosting fees for 1 month
  • $300 will cover 1 local get-together
  • $400 will cover printing 5000 brochures
  • $500 will cover outside programming fees
  • $2000 will cover non-newsletter postage fees for 1 year
  • $3000 will cover 1 newsletter printing and mailing
  • $5000 will cover 1 international member conference

ACDHO – groups / organizations that truly help and support CDH families and the CDH Community


ACDHO – The Alliance of Congenital Diaphragmatic Hernia Organizations
http://health.groups.yahoo.com/group/acdho/

Alliance of many CDH Organizations supporting families and research of Congenital Diaphragmatic Hernia. This listserv is for organization founders, presidents and CEO’s to keep each other abreast of research studies, new procedures, and organization problems. By working together as a team we can support each other, and the babies and families, in the fight against CDH.

These are the CDH organizations that truly support these babies and work together. We are a large Global CDH community working to increase research, make sure that all families have information and support and protect CDH awareness so that it belongs to all.

Each organization in ACDHO is equal, there are no leaders. Organizations / groups / sites invited into ACHO have shown high integrity in helping CDH families, offer research or support for CDH and a clear desire to work with the entire CDH community. Invitations are by a majority vote to secure that ACDHO goals remain positive, that the group works well together and that ACDHO is a safe environment to work together to help CDH families.

This listserv / alliance is *not* for individual CDH parents, survivors, etc. Please join the various groups and organizations for CDH information, support, research and awareness that offer services at the member level for CDH families.

Organizations / sites / groups that are members or who have been invited and that show a high degree of integrity in helping the CDH community and that we support are:

CHERUBS
CHERUBS Australia
CHERUBS UK
CHERUBS Mexico
A Rainbow of Hope
Jack Ryan Gillham Foundation
Olivia Raine Foundation
Cody’s Foundation
Kays Kids / Real Hope For CDH
Johns Hopkins Unnamed CDH Group
Little Lambs
The J.C. Nicholson II Research Foundation
En Stitching Hernia Diafragmatica (The Netherlands)
Ernia Diaframmatica Congenita gruppo di supporto (Italy)
Association Hernie Daphragmatique (France)
International CDH Study Group
Toronto Children’s Hospital CDH Clinic
UCSF Fetal Treatment Center
Boston Children’s Hospital / Harvard University CDH Clinic
CHOP CDH Clinic
Wisconsin Children’s Hospital
Vanderbilt Children’s Hospital
St. Louis Children’s Hospital / Washington University CDH Research
University of Florida, Shands, CDH Clinic

Please show your support to these groups and organizations who support CDH families!

Congenital Diaphragmatic Hernia Blog Ring


CDH families all over the internet are joining in on the Congenital Diaphragmatic Hernia Blog Webring. A webring connects sites or blogs with a similar interest so that readers can turn from site to site (or blog to blog) throughout the ring. Over 50 CDH blogs are currently in this ring.

To join, you can go here: http://www.ringsworld.com/cdhblogsring/join.html#2

To flip through the blogs, just click on Next or Previous under the blogs ring logo to the right of our blog.

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.

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

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

CHERUBS Phone Survey Results

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

Question #1. Are you happy with CHERUBS services?

We had requests for more local events and more newsletters.

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

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

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

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



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