Goodsearch.com will donate everytime you use their site as your search engine (like Google, Yahoo, etc). Just make sure to add CHERUBS as your charity of choice and they will donate! It doesn't cost you a penny!
And, if you are shopping on-line, please also use Goodsearch to do your shopping. Wal-Mart, Sears, Target, Circuit City, Toys 'R Us, Best Buy, and 100's of other popular stores participate - you shop through Goodsearch and they donate a percentage of your purchase to CHERUBS. Again, it doesn't cost you a penny!
http://www.goodsearch.com/?charityid=856932
CHERUBS runs solely on donations and fundraisers to offer all of our services to families affected by Congenital Diaphragmatic Hernia. We are run totally by volunteers and on a limited budget. Please help us to help families affected by CDH. www.cdhsupport.org
Please forward this to your friends and family! :)
Monday, November 26, 2007
Congenital Diaphragmatic Hernia Awareness Items
The members have voted! We now have a new Congenital Diaphragmatic Hernia Awareness Ribbon as well as a CDH Logo that is more masculine for the dads to wear! You can purchase 100's of items through our web site at www.cdhsupport.org CDH Awareness Items make great holiday gifts!
Angel Ball, Golf Tournament & 2008 CHERUBS International Member Conference
I've set up a poll on CHERUBS web Site. Our members need to decide on the 2008 Member Conference, but we also need to take into consideration the fundraisers that will be paying for this conference.
We are planning an Angel Ball and Golf Tournament for the weekend of July 26-27 in North Carolina. I just found a place today and whew! It was hard to find a place that we could afford that is nice - we want to raise funds at a fundraisers not spend it all on the event itself. But we found a great place!!! Smile
The Angel Ball will be a formal affair held at Duke Gardens. They are holding the last Saturday in 2008 for us that hasn't been booked yet and are giving us an incredible price, which sponsors will cover. The garden is just gorgeous, it is absolutely fairy tale beautiful. We can have the conference hall, which is great in case it rains. The conference hall comes with a beautiful lily pond right outside with a formal oriental type garden and we'd have to get a couple of tents too because the hall only holds 150 people and I'm planning to sell about 400 tickets. The English Gardens can be toured until dark (9:00 that time of year) and will make for awesome photos. I'm still begging to be able to have the ball there, we'll see what I can pull off. Wink We'll also have a silent auction with donations from artists (we have 2 pieces already). Durham / Raleigh / Chapel Hill has a huge artist community, so we should be able to pull that off. Attire will be black tie, with an emphasis on "white" and women will be encouraged to pull out their old wedding dresses and wear them again. We have several wedding service vendors who have already volunteer their time and services and we're hoping to really play up the whole wedding dress thing as that will sell more tickets. Of course all CHERUBS members are encouraged to attend! Smile You can see Duke hospital from the Gardens so there is as top hospital here, plus tons of hotels and I'm 90% certain we can get a group of nurses to watch any cherubs for a few hours that night - I know a ton of nurses who work at Duke that I might be able to beg to volunteer for us. Plus, UNC is just up the road too in Chapel Hill. During the day, before the ball, the gardens is a wonderful place to take the kids to walk around, feed the ducks and picnic. Maybe we can have an informal member picnic that day, though I don't know how much time I'll have to attend because I'll be swamped with the Ball arrangements.
Golf Tournament on Sunday. Actually, the golf tournament will be in Wake Forest, which is north of Raleigh, about 40 minutes from Durham with the traffic. There are a couple of golf pros who live in the area so I'm going to see if we can get them in the tournament. Craig is good friends with one of them but I don't think he'll be able to attend that weekend as it's in the middle of PGA tour season, but I will certainly beg him to try to come. Smile We will definitely have 1 former pro in attendance, but he was on the tour many years ago and only for a couple of years so his name isn't very well known.
Now, all that info is there for that weekend and the money raised will go to the Conference. BUT a lot of parents have requested that we hold the conference at the same time because they want to attend these events as well. If we do that, we can easily book a conference place here and hold it on Friday or Monday as an all day conference (we'll make sure the kids are entertained). All extra money not used will go to 2009's Member Conference. Honestly, I really like this idea, it sure would make it easier to plan and it would be a lot cheaper to do it all at once and would be awesome to already have a lot of money needed for 2009 already. If we have the conference elsewhere it will have to be in August because we'll need the money from the fundraisers and they won't be until late July.
So here are our options:
1. Durham/Raleigh, NC - Angel Ball, Golf Tournament and Conference all in one. We can get a surgeon from Duke or UNC to guest speak. Upside - we save a lot of money and can afford to better go to the one of the following 3 places next year. Downside - this area isn't the greatest tourist location, though we do have an international airport.
2. Orlando, FL - Disney World area, a favorite for everyone, we had an absolute blast and very successful 2000 conference there. We'll have to find out about the rain season though. Upside - hotels can be cheaper and we can get discounts on Disney tickets for everyone. Downside - we had our last conference there.
3. Phoenix, AZ - where CHERUBS has a professional conference, but the upside is there will be a lot of guest speakers. Plus this would take us to the West Coast. Downside is it's in May, 2 months before the fundraisers, so we'll need more sponsors and more fundraising events.
4. Boston, MA - where the CDH clinic is and it would take us up North rather than the South again. Downside - Boston is a very expensive place to hold a conference. Upside - CDH clinic and nice weather.
We are planning an Angel Ball and Golf Tournament for the weekend of July 26-27 in North Carolina. I just found a place today and whew! It was hard to find a place that we could afford that is nice - we want to raise funds at a fundraisers not spend it all on the event itself. But we found a great place!!! Smile
The Angel Ball will be a formal affair held at Duke Gardens. They are holding the last Saturday in 2008 for us that hasn't been booked yet and are giving us an incredible price, which sponsors will cover. The garden is just gorgeous, it is absolutely fairy tale beautiful. We can have the conference hall, which is great in case it rains. The conference hall comes with a beautiful lily pond right outside with a formal oriental type garden and we'd have to get a couple of tents too because the hall only holds 150 people and I'm planning to sell about 400 tickets. The English Gardens can be toured until dark (9:00 that time of year) and will make for awesome photos. I'm still begging to be able to have the ball there, we'll see what I can pull off. Wink We'll also have a silent auction with donations from artists (we have 2 pieces already). Durham / Raleigh / Chapel Hill has a huge artist community, so we should be able to pull that off. Attire will be black tie, with an emphasis on "white" and women will be encouraged to pull out their old wedding dresses and wear them again. We have several wedding service vendors who have already volunteer their time and services and we're hoping to really play up the whole wedding dress thing as that will sell more tickets. Of course all CHERUBS members are encouraged to attend! Smile You can see Duke hospital from the Gardens so there is as top hospital here, plus tons of hotels and I'm 90% certain we can get a group of nurses to watch any cherubs for a few hours that night - I know a ton of nurses who work at Duke that I might be able to beg to volunteer for us. Plus, UNC is just up the road too in Chapel Hill. During the day, before the ball, the gardens is a wonderful place to take the kids to walk around, feed the ducks and picnic. Maybe we can have an informal member picnic that day, though I don't know how much time I'll have to attend because I'll be swamped with the Ball arrangements.
Golf Tournament on Sunday. Actually, the golf tournament will be in Wake Forest, which is north of Raleigh, about 40 minutes from Durham with the traffic. There are a couple of golf pros who live in the area so I'm going to see if we can get them in the tournament. Craig is good friends with one of them but I don't think he'll be able to attend that weekend as it's in the middle of PGA tour season, but I will certainly beg him to try to come. Smile We will definitely have 1 former pro in attendance, but he was on the tour many years ago and only for a couple of years so his name isn't very well known.
Now, all that info is there for that weekend and the money raised will go to the Conference. BUT a lot of parents have requested that we hold the conference at the same time because they want to attend these events as well. If we do that, we can easily book a conference place here and hold it on Friday or Monday as an all day conference (we'll make sure the kids are entertained). All extra money not used will go to 2009's Member Conference. Honestly, I really like this idea, it sure would make it easier to plan and it would be a lot cheaper to do it all at once and would be awesome to already have a lot of money needed for 2009 already. If we have the conference elsewhere it will have to be in August because we'll need the money from the fundraisers and they won't be until late July.
So here are our options:
1. Durham/Raleigh, NC - Angel Ball, Golf Tournament and Conference all in one. We can get a surgeon from Duke or UNC to guest speak. Upside - we save a lot of money and can afford to better go to the one of the following 3 places next year. Downside - this area isn't the greatest tourist location, though we do have an international airport.
2. Orlando, FL - Disney World area, a favorite for everyone, we had an absolute blast and very successful 2000 conference there. We'll have to find out about the rain season though. Upside - hotels can be cheaper and we can get discounts on Disney tickets for everyone. Downside - we had our last conference there.
3. Phoenix, AZ - where CHERUBS has a professional conference, but the upside is there will be a lot of guest speakers. Plus this would take us to the West Coast. Downside is it's in May, 2 months before the fundraisers, so we'll need more sponsors and more fundraising events.
4. Boston, MA - where the CDH clinic is and it would take us up North rather than the South again. Downside - Boston is a very expensive place to hold a conference. Upside - CDH clinic and nice weather.
CHERUBS Name Change
We are filing paperwork to make our 501(c)III organization Incorporated. Beginning on January 1st, we will have a new name. Our Boards have agreed upon:
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
The words Advocacy and Awareness are the same thing but Advocacy is a bit out-dated. It was used back in 1995 when I set CHERUBS up, but Awareness is now used more often so we decided to up-date the name since we are going through this process anyway.
We should be Incorporated fairly soon after the new year. It only took us 3 months to figure out how to file all the 501(c)III paperwork back in 1995 when I was only 22 yrs old and doing it all myself and without the internet for help. So this should be a piece of cake this time around! Wink Plus, we have lawyers and an accountant all pro bono to help us if we need it.
All of our new Cafepress items will reflect the new name and web site address.
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
The words Advocacy and Awareness are the same thing but Advocacy is a bit out-dated. It was used back in 1995 when I set CHERUBS up, but Awareness is now used more often so we decided to up-date the name since we are going through this process anyway.
We should be Incorporated fairly soon after the new year. It only took us 3 months to figure out how to file all the 501(c)III paperwork back in 1995 when I was only 22 yrs old and doing it all myself and without the internet for help. So this should be a piece of cake this time around! Wink Plus, we have lawyers and an accountant all pro bono to help us if we need it.
All of our new Cafepress items will reflect the new name and web site address.
Happy 10th Birthday to CHERUBS Web Site!
November 14th was the 10 year anniversary of CHERUBS web site. It has gone through many changes and our first one was rather cheesy, but look how far we've come! Angel
I can't believe that was 10 years ago. That's how I became a web designer - learning HTML code by hand long before there was software that made it much, much easier for beginners. Even Flash & Animation are simple to learn now with all the software that does the coding for you, but back then there was *nothing* to help us out but we did it within 6 months of getting on-line!
10 years ago.... wow, the time has flown by in some ways and dragged in others. The next 10 years will bring more awareness, more research and the cause and prevention of CDH!
I can't believe that was 10 years ago. That's how I became a web designer - learning HTML code by hand long before there was software that made it much, much easier for beginners. Even Flash & Animation are simple to learn now with all the software that does the coding for you, but back then there was *nothing* to help us out but we did it within 6 months of getting on-line!
10 years ago.... wow, the time has flown by in some ways and dragged in others. The next 10 years will bring more awareness, more research and the cause and prevention of CDH!
Web Site / Membership Security
Hi Everyone,
At 03:03:02 EST an attempt was made from a Charlottesville, VA computer at 76.5.79.149 [va-76-5-79-149.dhcp.embarqhsd.net] to try to export our member database. Hacking is a federal offense and Embarq will confirm the user by IP address. The attempt was fruitless, but this incident just reaffirms the need to be cautious with our membership info.
Our membership database is safe, we have tons of precautions and firewalls and any attempts are logged in case charges need to be filed. CHERUBS does not give away or sell our membership information to anyone. It it used solely to contact all of you for matching, newsletters, etc. We protect our database diligently and we respect your privacy immensely, as all non-profits should. You all have enough going from dealing with CDH, we truly believe in protecting our members and providing a safe place for you all to talk and support each other.
We have also had over a dozen attempts made to try to join our membership under aliases and false information - just in the past few months since our site went live. Some of you might remember Elise Martin, Ann Poore, and Cathy Allen from our old listserv - all aliases of the same person who tried to hack into our database, all aliases that got onto the listserv and tried to start problems. We now have several safety measures, including a new volunteer position, New Member Coordinator (thank you, Amy!), just to keep this drama out of CHERUBS.
So we are posting this to let you all know that we are safe, but we need your help to keep the drama out. Do not give out your information to people that you don't know. Do not give out any other member's contact information. If someone contacts you and tries to slander CHERUBS, recruit you to other web sites or otherwise cause trouble or drama - please report them immediately to any of the moderators and please forward any e-mails or PMs to dawn_torrence@cherubs-cdh.org.
It's very much a shame that this post is even needed, but let's just keep an eye out and let's also not let one person interfere with all the good we do here. Now, let's keep being *supportive* and positive, encouraging and uplifting, constructive and working together to bring more CDH Awareness, research, and most of all - what CHERUBS was started for - support.
At 03:03:02 EST an attempt was made from a Charlottesville, VA computer at 76.5.79.149 [va-76-5-79-149.dhcp.embarqhsd.net] to try to export our member database. Hacking is a federal offense and Embarq will confirm the user by IP address. The attempt was fruitless, but this incident just reaffirms the need to be cautious with our membership info.
Our membership database is safe, we have tons of precautions and firewalls and any attempts are logged in case charges need to be filed. CHERUBS does not give away or sell our membership information to anyone. It it used solely to contact all of you for matching, newsletters, etc. We protect our database diligently and we respect your privacy immensely, as all non-profits should. You all have enough going from dealing with CDH, we truly believe in protecting our members and providing a safe place for you all to talk and support each other.
We have also had over a dozen attempts made to try to join our membership under aliases and false information - just in the past few months since our site went live. Some of you might remember Elise Martin, Ann Poore, and Cathy Allen from our old listserv - all aliases of the same person who tried to hack into our database, all aliases that got onto the listserv and tried to start problems. We now have several safety measures, including a new volunteer position, New Member Coordinator (thank you, Amy!), just to keep this drama out of CHERUBS.
So we are posting this to let you all know that we are safe, but we need your help to keep the drama out. Do not give out your information to people that you don't know. Do not give out any other member's contact information. If someone contacts you and tries to slander CHERUBS, recruit you to other web sites or otherwise cause trouble or drama - please report them immediately to any of the moderators and please forward any e-mails or PMs to dawn_torrence@cherubs-cdh.org.
It's very much a shame that this post is even needed, but let's just keep an eye out and let's also not let one person interfere with all the good we do here. Now, let's keep being *supportive* and positive, encouraging and uplifting, constructive and working together to bring more CDH Awareness, research, and most of all - what CHERUBS was started for - support.
Fall 2007 Silver Lining Issue now out!
You can download our 2007 Fall issue of The Silver Lining newsletter on our web site in the downloads section or the newsletter section at:
http://www.cdhsupport.org/newsletter
It is in full color and 28 pages long, full of stories, news, info and much more. It will be mailed out in 2 weeks to those of you who are subscribers, requested to be on the mailing list (it's on your Profile/membership form) or who aren't on-line. It cost approximately $30 a year to print and mail 4 newsletter in the U.S. so if you can afford to subscribe or can print our newsletter yourself instead of being on the mailing list, please do so. Smile
A huge thank you to our Newsletter Angel, Stephanie, who is helping us to cover printing costs in honor of her cherub Shelby Oliverez, to all of our volunteers, to Brenda Slavin for her article on Relationships, and to all the cherubs and families who contributed photos and stories. Thank you all!
Please feel free to print off several copies for family, friends and your cherub's doctor/hospital!
http://www.cdhsupport.org/newsletter
It is in full color and 28 pages long, full of stories, news, info and much more. It will be mailed out in 2 weeks to those of you who are subscribers, requested to be on the mailing list (it's on your Profile/membership form) or who aren't on-line. It cost approximately $30 a year to print and mail 4 newsletter in the U.S. so if you can afford to subscribe or can print our newsletter yourself instead of being on the mailing list, please do so. Smile
A huge thank you to our Newsletter Angel, Stephanie, who is helping us to cover printing costs in honor of her cherub Shelby Oliverez, to all of our volunteers, to Brenda Slavin for her article on Relationships, and to all the cherubs and families who contributed photos and stories. Thank you all!
Please feel free to print off several copies for family, friends and your cherub's doctor/hospital!
More from April 7, 1999
More from April 7, 1999:
-----------------------------
Hi again everyone,
Well, the boys vs. girls theory is just that- a theory,
albeit a popular one. I've been searching through our
research articles and the net and have yet to find an
article on CDH and gender. BUT, I haven't found an article
to disprove the theory either.
From our 1998 CDH Survey Results (keep in mind this is from
our membership and not the total population of CDH patients,
and I'm not including those cherubs who weren't born yet):
Boys- 67 survivors, 30 non-survivors (69% survival rate)
Girls- 26 survivors, 12 non-survivors (46% survival rate)
Total- 93- 72% boys, 28% girls
Now, these results are DRASTICALLY different from most
medical journal articles. The gender percentages are about
right, but the survival rate isn't. The survival rate in
most articles is 50% for all patients (which is about what
the 69% and 46% equal out to, give or take a few
percentages,... hmmmmmmm.... we'll have to study this one
more).
We have to remember that most doctors and nurses see very
few CDH patients in their entire careers- OBs usually see
less than 3, so do Level 1 U/S techs, surgeons in large
hospitals are the ones who see the high number of patients-
the ones with the most experience to make such statements as
"girls do better than boys". BUT are they talking about CDH
patients or all their patients in general?
Now, this is MY personal opinion (not a medical one, not a
well-researched one that I can prove) from all the research
reading I've done and all the 100's of families I've talked
to over the years- there are more boys diagnosed with CDH.
In fact, there are some hereditary syndromes that cause CDH
to occur in just boys (very rare, don't anyone freak out
over that statement- talk to your genetic counselor before
assuming anything). When we think about the fact that girls
outnumber boys in the general population, it is very odd
that there are more boys with CDH. As for survival rates
and whether girls do better than boys- I used to think the
same thing that a lot of you are talking about, but now,
it's hard to tell. I've seen boys stay in the hospital for
a matter of days and girls in the hospital for months. In
the hospital with Shane, I watched a little boy with CDH go
home breastfeeding at 2 weeks old and a little girl with CDH
die at 1 week old (out of the total of 4 CDH patients at
this hospital the entire 10 months we were there, Shane
included). I think it depends more on the location of the
CDH, the organs involved, and the lung growth rather than
the sex of the patient- and sometimes I even doubt that
after seeing babies with no diaphragm on one side live and
babies with just a small hole die. We also have to consider
not just CDH, but side effects like infections and
pneumonia- hospital controlled side effects that have
nothing to do with the child's gender, location of CDH, lung
growth, or organs involved. That's why we have the
complications question on the parent worksheet (membership
form) and survey- because you cannot just look at CDH alone
to make such a statement a fact- you have to know if it was
JUST the CDH that caused death or long hospital stays or
some other type of complication. Soooo, if a doctor or
nurse makes that statement, more than likely it's an
overall, in general statement, about their hospital(s)'s
experience with CDH patients and all complications
involved. I hope this makes sense.
As to whether you should believe certain statements from
doctors or nurses- yes, they are "guessing" unless they have
done actual research or read actual research or they're
making statements from their own experiences- neither is
wrong or right, just inconclusive and they are a matter of
their own opinions 99% of the time. And all medical
professionals are human, not encyclopedias that can spout
statistics from the top of their heads when asked a question
at any given moment. But like I tell everyone over and over
and over.... you can't go by general statements from anyone
(including doctors, nurses, other parents, research, and
even CHERUBS), each patient is different. : )
About the sides of CDH in girls vs boys-
Right-sided CDH is more common in girls, but remember, only
about 20% of all CDH's are right-sided and girls are more
likely to have left-sided CDH than right-sided, just as boys
are. Bilateral CDH (both sides) is about equal in both
sexes, and is very rare.
I hope this helps to answer some of the questions and I
didn't totally confuse everyone.
Dawn T.
-----------------------------
Hi again everyone,
Well, the boys vs. girls theory is just that- a theory,
albeit a popular one. I've been searching through our
research articles and the net and have yet to find an
article on CDH and gender. BUT, I haven't found an article
to disprove the theory either.
From our 1998 CDH Survey Results (keep in mind this is from
our membership and not the total population of CDH patients,
and I'm not including those cherubs who weren't born yet):
Boys- 67 survivors, 30 non-survivors (69% survival rate)
Girls- 26 survivors, 12 non-survivors (46% survival rate)
Total- 93- 72% boys, 28% girls
Now, these results are DRASTICALLY different from most
medical journal articles. The gender percentages are about
right, but the survival rate isn't. The survival rate in
most articles is 50% for all patients (which is about what
the 69% and 46% equal out to, give or take a few
percentages,... hmmmmmmm.... we'll have to study this one
more).
We have to remember that most doctors and nurses see very
few CDH patients in their entire careers- OBs usually see
less than 3, so do Level 1 U/S techs, surgeons in large
hospitals are the ones who see the high number of patients-
the ones with the most experience to make such statements as
"girls do better than boys". BUT are they talking about CDH
patients or all their patients in general?
Now, this is MY personal opinion (not a medical one, not a
well-researched one that I can prove) from all the research
reading I've done and all the 100's of families I've talked
to over the years- there are more boys diagnosed with CDH.
In fact, there are some hereditary syndromes that cause CDH
to occur in just boys (very rare, don't anyone freak out
over that statement- talk to your genetic counselor before
assuming anything). When we think about the fact that girls
outnumber boys in the general population, it is very odd
that there are more boys with CDH. As for survival rates
and whether girls do better than boys- I used to think the
same thing that a lot of you are talking about, but now,
it's hard to tell. I've seen boys stay in the hospital for
a matter of days and girls in the hospital for months. In
the hospital with Shane, I watched a little boy with CDH go
home breastfeeding at 2 weeks old and a little girl with CDH
die at 1 week old (out of the total of 4 CDH patients at
this hospital the entire 10 months we were there, Shane
included). I think it depends more on the location of the
CDH, the organs involved, and the lung growth rather than
the sex of the patient- and sometimes I even doubt that
after seeing babies with no diaphragm on one side live and
babies with just a small hole die. We also have to consider
not just CDH, but side effects like infections and
pneumonia- hospital controlled side effects that have
nothing to do with the child's gender, location of CDH, lung
growth, or organs involved. That's why we have the
complications question on the parent worksheet (membership
form) and survey- because you cannot just look at CDH alone
to make such a statement a fact- you have to know if it was
JUST the CDH that caused death or long hospital stays or
some other type of complication. Soooo, if a doctor or
nurse makes that statement, more than likely it's an
overall, in general statement, about their hospital(s)'s
experience with CDH patients and all complications
involved. I hope this makes sense.
As to whether you should believe certain statements from
doctors or nurses- yes, they are "guessing" unless they have
done actual research or read actual research or they're
making statements from their own experiences- neither is
wrong or right, just inconclusive and they are a matter of
their own opinions 99% of the time. And all medical
professionals are human, not encyclopedias that can spout
statistics from the top of their heads when asked a question
at any given moment. But like I tell everyone over and over
and over.... you can't go by general statements from anyone
(including doctors, nurses, other parents, research, and
even CHERUBS), each patient is different. : )
About the sides of CDH in girls vs boys-
Right-sided CDH is more common in girls, but remember, only
about 20% of all CDH's are right-sided and girls are more
likely to have left-sided CDH than right-sided, just as boys
are. Bilateral CDH (both sides) is about equal in both
sexes, and is very rare.
I hope this helps to answer some of the questions and I
didn't totally confuse everyone.
Dawn T.
From April 7, 1999
We've been talking about the occurrance rate of CDH as compared to spina bifida and cystic fibrosis for years. Especially how low CDH awareness is!!! We've done a ton of research over the years and I was putting some stuff together this weekend for a project and I ran across a bunch of interesting old posts on our lists. I thought I'd post a few of them. Heck, I'll post several over the next few days. If any of you have any neat stats, please feel free to post too!
From April 7, 1999:
-----------------------------------
Re: Boys vs. Girls Theory
LOL, Heidi, now you've got me searching the internet, trying to find the
statistics on boys vs
girls born. I did not know any of the information you posted- learn something
new every day.
: )
This is what I found at www.infoplease.com (love this site, just found it- after
searching an
hour):
In 1996 in the US, 1,990,480 boys and 1,901,014 girls were born (ok, I was wrong
about the boy
to girl ratio- no idea where I came up with that, remember hearing it
somewhere). This info
that I found only includes babies born to White and African American parents (no
idea why it
didn't include other races). Total births for 1996 in the US was 3,891,494. If
we assume
(meaning no one knows for sure) that 1 in every 2500 babies has CDH, this means
that
approximately 1556 babies were born with CDH in 1996 in just these 2 races
alone- 4-5 babies a
day. WOW!!!!
Some CDH occurance trivia facts to think about in comparison to more publicized
devastations
(I'm not discounting any of these tragedies, Lord knows my family falls into
more than one of
these lists, this is just FYI):
-Approx. 1556 babies are born with CDH each year, approx. 775 of these babies do
not survive
(.04% chance of being born with CDH).
-Tornados injure approx. 1500 people each year in the US, 80 don't survive.
-In 1997, 306 people were struck by lightening, 42 didn't survive. (this means
we're 5 times
more likely to have a baby with CDH than to be struck by lightening).
-1n 1996, 37 people in the US were killed by hurricanes.
-118 people were killed by floods in the US in 1997.
-In 1989, 98 people in the US died of Botulism
-In 1996, 508 cases of Measles were reported in the US, 1 person didn't survive.
There were
238 cases of German Measles.
-There were 560 quadruplet births in the US in 1996.
I had a horrible time trying to find world birth statistics. Couldn't find a
thing on the birth
rate or gender rate.
My head is spinning thinking of all the CDH born in the world every day- and
with only 300
families in CHERUBS, so many 1000's of families are going through this alone.
Well, too much brain overload for me tonight. I promise to get all the other
e-mails answered
today (behind, yet again).
Dawn T.
From April 7, 1999:
-----------------------------------
Re: Boys vs. Girls Theory
LOL, Heidi, now you've got me searching the internet, trying to find the
statistics on boys vs
girls born. I did not know any of the information you posted- learn something
new every day.
: )
This is what I found at www.infoplease.com (love this site, just found it- after
searching an
hour):
In 1996 in the US, 1,990,480 boys and 1,901,014 girls were born (ok, I was wrong
about the boy
to girl ratio- no idea where I came up with that, remember hearing it
somewhere). This info
that I found only includes babies born to White and African American parents (no
idea why it
didn't include other races). Total births for 1996 in the US was 3,891,494. If
we assume
(meaning no one knows for sure) that 1 in every 2500 babies has CDH, this means
that
approximately 1556 babies were born with CDH in 1996 in just these 2 races
alone- 4-5 babies a
day. WOW!!!!
Some CDH occurance trivia facts to think about in comparison to more publicized
devastations
(I'm not discounting any of these tragedies, Lord knows my family falls into
more than one of
these lists, this is just FYI):
-Approx. 1556 babies are born with CDH each year, approx. 775 of these babies do
not survive
(.04% chance of being born with CDH).
-Tornados injure approx. 1500 people each year in the US, 80 don't survive.
-In 1997, 306 people were struck by lightening, 42 didn't survive. (this means
we're 5 times
more likely to have a baby with CDH than to be struck by lightening).
-1n 1996, 37 people in the US were killed by hurricanes.
-118 people were killed by floods in the US in 1997.
-In 1989, 98 people in the US died of Botulism
-In 1996, 508 cases of Measles were reported in the US, 1 person didn't survive.
There were
238 cases of German Measles.
-There were 560 quadruplet births in the US in 1996.
I had a horrible time trying to find world birth statistics. Couldn't find a
thing on the birth
rate or gender rate.
My head is spinning thinking of all the CDH born in the world every day- and
with only 300
families in CHERUBS, so many 1000's of families are going through this alone.
Well, too much brain overload for me tonight. I promise to get all the other
e-mails answered
today (behind, yet again).
Dawn T.
September, 2007 Member Letter
Dear Members,
It has been a long time since my last member e-mail but CHERUBS is still here, still going strong and we have tons of new services for CDH families! Our membership is now over 1900, including 1800 parents and 100 medical professionals. You can see all of our activities over the years at www.cdhsupport.org/about/timeline.php. There is quite a bit of news to fill you in on:
We have a new web site! Our new site address is www.cdhsupport.org. Our new web site offers many more services; CDH Research Library, over 100 forums, your own photo album, your own blogs to keep your family and friends updated on your cherubs and/or family, 24/7 chatroom, calendar, and much more. We are now phasing out our listserv programs in favor of our new member forums - this will greatly cut down on everyone's yahoo spam.
Our new site is also password protected so that ony members can view certain sections. This allows for more privacy, as well as the accessibility for members to update their own forms. Our old site was averaging 300,000 hits per month and we expect to see a huge growth in membership within the next year with the new web site. I can't stress to you how excited we are about our new web site! Log in information can be found at http://cdhsupport.org/members/portal.php?topic_id=739
We have 2 contests going on here at CHERUBS! We need drawings from cherubs and siblings for our holiday cards as well as other cafepress items. We also have a posting contest - the member who posts on the new site the most each month will win a CHERUBS t-shirt. Make sure to check out our t-shirts as well as our hundred's of other CHERUBS logo items for sale on our site. We just created "Cherub On Board" maternity shirts for our expectant parents.
We are planning a 2008 International CHERUBS Member Conference. We are undecided on the location as of yet but it's narrowed down to 3 possible locations: Phoenix, Orlando, or Boston. We are currently looking for sponsors and volunteers. If you can help, please contact us. We also held get-togethers in Ohio and Great Britain and our Australia event will take place in October.
Congratulations to CHERUBS UK for achieving Non-Profit status and their own web site. CHERUBS Australia also has their own web site and will achieve Non-Profit status soon as well. We are very proud of both of these groups! All 3 of our organizations are now members of the newly formed group the Alliance of Congenital Diaphragmatic Hernia Organizations, created to band all CDH groups together
We are planning several fundraisers including an Angel Ball, celebrity auction and golf tournament. We also have a new program, Angels for CHERUBS, which will hopefully encourage members to help out in various ways. Donations have greatly decreased in the past few years - despite our membership growing. This has caused us to cut back on services such as New Parent Info Packets and newsletter publication. We recently underwent our first audit by the state of North Carolina and passed with flying colors, however, we have been encouraged to file for Incorporation status which we are now doing.
Last fall we published "Stories of Cherubs", which included stories of over 300 children born with CDH. We encourage everyone to purchase a copy not only for yourselves, but for your cherub's PICU / NICU library as well. This fall, we are putting together our first annual CHERUBS Yearbook with photos of all of our cherubs and families. We are also planning 3 children's books as well.
Our publications are getting back on track. CHERUBS CDH Parent Reference Guide will be revised next week and our newsletter will be out in October. Both will be available to download on our web site. Our CDH Research Survey Results will be published in December. Also, by December we are hoping to have our new site programmed to tabulate research on the fly.
We have many new volunteers, including 2 new Board Members; Betty Mekdeci, Director of Birth Defects Research for Children and Shane Perry PLLC, our new Legal Advisor. We still need more State & International Representatives, Translators, Book Committee Members and are looking for a Flash expert as well as Videographer.
Some Important CHERUBS Links:
CHERUBS New Web Site - http://www.cdhsupport.org
Register / Sign Up with CHERUBS - http://www.cdhsupport.org/members/profile.php?mode=register
Log In Information for New Site - http://cdhsupport.org/members/portal.php?topic_id=739
CHERUBS Member Portal - http://cdhsupport.org/members/portal.php
Public & Member Forums - http://cdhsupport.org/members/index.php
CDH Research Library - http://cdhsupport.org/members/links.php
CHERUBS Photo Albums - http://cdhsupport.org/members/album.php
CHERUBS Member Albums - http://cdhsupport.org/members/album_personal_index.php
CHERUBS Member Blogs - http://cdhsupport.org/members/weblogs.php
CHERUBS Volunteers - http://www.cdhsupport.org/volunteers
Downloadable Information - http://cdhsupport.org/members/dload.php
CHERUBS Timeline - www.cdhsupport.org/about/timeline.php
We encourage all of our members to log into the new site and update your information. We welcome you to start your blog and to add photos and links. We also encourage you to forward this e-mail to your cherub's doctor and to any other families affected by CDH.
If you have any questions or any member updates, please feel free to contact me. I'd like to welcome you all to our new site and I thank you for your continued support of CHERUBS.
Sincerely,
Dawn M. Torrence, President & Founder
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
270 Coley Rd, Henderson, NC 27537, USA
252-492-6003
dawn_torrence@cherubs-cdh.org
www.cdhsupport.org
It has been a long time since my last member e-mail but CHERUBS is still here, still going strong and we have tons of new services for CDH families! Our membership is now over 1900, including 1800 parents and 100 medical professionals. You can see all of our activities over the years at www.cdhsupport.org/about/timeline.php. There is quite a bit of news to fill you in on:
We have a new web site! Our new site address is www.cdhsupport.org. Our new web site offers many more services; CDH Research Library, over 100 forums, your own photo album, your own blogs to keep your family and friends updated on your cherubs and/or family, 24/7 chatroom, calendar, and much more. We are now phasing out our listserv programs in favor of our new member forums - this will greatly cut down on everyone's yahoo spam.
Our new site is also password protected so that ony members can view certain sections. This allows for more privacy, as well as the accessibility for members to update their own forms. Our old site was averaging 300,000 hits per month and we expect to see a huge growth in membership within the next year with the new web site. I can't stress to you how excited we are about our new web site! Log in information can be found at http://cdhsupport.org/members/portal.php?topic_id=739
We have 2 contests going on here at CHERUBS! We need drawings from cherubs and siblings for our holiday cards as well as other cafepress items. We also have a posting contest - the member who posts on the new site the most each month will win a CHERUBS t-shirt. Make sure to check out our t-shirts as well as our hundred's of other CHERUBS logo items for sale on our site. We just created "Cherub On Board" maternity shirts for our expectant parents.
We are planning a 2008 International CHERUBS Member Conference. We are undecided on the location as of yet but it's narrowed down to 3 possible locations: Phoenix, Orlando, or Boston. We are currently looking for sponsors and volunteers. If you can help, please contact us. We also held get-togethers in Ohio and Great Britain and our Australia event will take place in October.
Congratulations to CHERUBS UK for achieving Non-Profit status and their own web site. CHERUBS Australia also has their own web site and will achieve Non-Profit status soon as well. We are very proud of both of these groups! All 3 of our organizations are now members of the newly formed group the Alliance of Congenital Diaphragmatic Hernia Organizations, created to band all CDH groups together
We are planning several fundraisers including an Angel Ball, celebrity auction and golf tournament. We also have a new program, Angels for CHERUBS, which will hopefully encourage members to help out in various ways. Donations have greatly decreased in the past few years - despite our membership growing. This has caused us to cut back on services such as New Parent Info Packets and newsletter publication. We recently underwent our first audit by the state of North Carolina and passed with flying colors, however, we have been encouraged to file for Incorporation status which we are now doing.
Last fall we published "Stories of Cherubs", which included stories of over 300 children born with CDH. We encourage everyone to purchase a copy not only for yourselves, but for your cherub's PICU / NICU library as well. This fall, we are putting together our first annual CHERUBS Yearbook with photos of all of our cherubs and families. We are also planning 3 children's books as well.
Our publications are getting back on track. CHERUBS CDH Parent Reference Guide will be revised next week and our newsletter will be out in October. Both will be available to download on our web site. Our CDH Research Survey Results will be published in December. Also, by December we are hoping to have our new site programmed to tabulate research on the fly.
We have many new volunteers, including 2 new Board Members; Betty Mekdeci, Director of Birth Defects Research for Children and Shane Perry PLLC, our new Legal Advisor. We still need more State & International Representatives, Translators, Book Committee Members and are looking for a Flash expert as well as Videographer.
Some Important CHERUBS Links:
CHERUBS New Web Site - http://www.cdhsupport.org
Register / Sign Up with CHERUBS - http://www.cdhsupport.org/members/profile.php?mode=register
Log In Information for New Site - http://cdhsupport.org/members/portal.php?topic_id=739
CHERUBS Member Portal - http://cdhsupport.org/members/portal.php
Public & Member Forums - http://cdhsupport.org/members/index.php
CDH Research Library - http://cdhsupport.org/members/links.php
CHERUBS Photo Albums - http://cdhsupport.org/members/album.php
CHERUBS Member Albums - http://cdhsupport.org/members/album_personal_index.php
CHERUBS Member Blogs - http://cdhsupport.org/members/weblogs.php
CHERUBS Volunteers - http://www.cdhsupport.org/volunteers
Downloadable Information - http://cdhsupport.org/members/dload.php
CHERUBS Timeline - www.cdhsupport.org/about/timeline.php
We encourage all of our members to log into the new site and update your information. We welcome you to start your blog and to add photos and links. We also encourage you to forward this e-mail to your cherub's doctor and to any other families affected by CDH.
If you have any questions or any member updates, please feel free to contact me. I'd like to welcome you all to our new site and I thank you for your continued support of CHERUBS.
Sincerely,
Dawn M. Torrence, President & Founder
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
270 Coley Rd, Henderson, NC 27537, USA
252-492-6003
dawn_torrence@cherubs-cdh.org
www.cdhsupport.org
This is me, the narrater behind CHERUBS blog
This is me, Dawn. I am the person behind the logo doing the typing for this profile here - but I am only 1 of 2000 CDH parents who make up CHERUBS.
I am the founder of CHERUBS but I am also the Mom of Shane (1/28/93 - 9/11/99) Diagnosed at birth with left-sided CDH, polyhydramnios, 6 CDH repairs, ASD, Pulmonary Sequestration, Hypospadius, Undescended Testes, Microcephaly, Hospital- 300 days at birth, Vent- 2 yrs, Oxygen- 3 yrs, trach 3 yrs, reflux, Nissen, NG tube 2 yrs, Mic-Key feeding button 4 yrs, deaf 6 yrs, blind 1 yr, 5 yrs impaired vision, Cerebral Palsy, developmentally delayed, passed way from pneumonia bought on by gastropleural fistula, no siblings.
I'll be posting updates about CHERUBS activities and latest news here. Please feel free to comment or to e-mail me at dawn_torrence@cherubs-cdh.org
If you are a CDH parent, don't forget to join our web site! We have a member forum with over 2000 CDH families. Membership is free!
http://www.cdhsupport.org
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