Is the one that features Camp Del Corazon. Rebekah participated in the filming of the dance scene. As I understand it, (I wasn't there) she is near the front of the stage on the side with John Stamos.
This is an article about the actor playing the main character tonight. He is also better known as Gibby from iCarly. I hear he is a very nice kid and hung out with the extras. We have a picture or two of him. I had no idea he was local to us. Ivan Talked to his parents (on accident...mentioned how nice the boy seemed)
http://www.ocregister.com/articles/camp-kids-heart-2345970-logan-noah
Anyhow tonight NBC at 10PST. And while I of course think it is neat that Rebekah is involved....I think it is Great to feature Camp Del Corazon on one of the last episodes of a hit show. The camp is completely free for any kids ages 7 and up with a heart defect. And that is not a cheap feat.
Showing posts with label CHDs. Show all posts
Showing posts with label CHDs. Show all posts
Thursday, March 26, 2009
Wednesday, February 25, 2009
E. R.
I used to be a huge fan of this show but, I stopped watching when almost every episode carried some political or moral message. I also was bummed about the constant killing off of docs I was really starting to like. (I totally missed Dr Pratts killing....)
Anyhow....
On March 26, they will be airing an episode written specifically for Camp Del Corazon (www.campdelcorazon.org) and I would venture to guess Tom Arnold had a big hand in it. The story line is about a kid with a heart defect and his struggles. I believe it is being played by the brother from iCarly.
Camp Del Corazon was asked to supply many of the extras so, yesterday Ivan and Rebekah spent the entire day on the Warner Brothers lot. Some of her friends have a longer commitment...which will surely mean more face time in the episode...some were even asked to bring sleeping bags...so clearly alot of this focuses on the camp. Rebekah was asked to dance. Ivan says if he hears that song "I feel good" one more time he might go crazy. They were reenacting the dances at camp. Rebekah was asked to bring her camp shirt but, for some reason never asked to put it on.
The awarenss to CHDs that this can bring is huge in my opinion. Not only did these actors work with these kids, but now everyone who watches ER will hear more about them and see the many "normal" kids that CHDs affect.
I wonder if there will be camp facts at the end of the episode? That would be kinda cool. And more in your face....There are at least 7 heart camps I can think of ...and prob more (there are 2 in California!) Just the sheer amount of kids who attend these would be a heck of an eye opener to many people who dont realize that that 1 out of every 100 people has a Heart Defect.
so dont forget to watch ER on the 26th of March...rebekah has light blue jeans, a flowered shirt and is wearing a lei in the scene....and prob drooling over John Stamos as I understand it....
Anyhow....
On March 26, they will be airing an episode written specifically for Camp Del Corazon (www.campdelcorazon.org) and I would venture to guess Tom Arnold had a big hand in it. The story line is about a kid with a heart defect and his struggles. I believe it is being played by the brother from iCarly.
Camp Del Corazon was asked to supply many of the extras so, yesterday Ivan and Rebekah spent the entire day on the Warner Brothers lot. Some of her friends have a longer commitment...which will surely mean more face time in the episode...some were even asked to bring sleeping bags...so clearly alot of this focuses on the camp. Rebekah was asked to dance. Ivan says if he hears that song "I feel good" one more time he might go crazy. They were reenacting the dances at camp. Rebekah was asked to bring her camp shirt but, for some reason never asked to put it on.
The awarenss to CHDs that this can bring is huge in my opinion. Not only did these actors work with these kids, but now everyone who watches ER will hear more about them and see the many "normal" kids that CHDs affect.
I wonder if there will be camp facts at the end of the episode? That would be kinda cool. And more in your face....There are at least 7 heart camps I can think of ...and prob more (there are 2 in California!) Just the sheer amount of kids who attend these would be a heck of an eye opener to many people who dont realize that that 1 out of every 100 people has a Heart Defect.
so dont forget to watch ER on the 26th of March...rebekah has light blue jeans, a flowered shirt and is wearing a lei in the scene....and prob drooling over John Stamos as I understand it....
Sunday, February 08, 2009
CHDs
I stole this from a friend....but I think it is important to read....she titled it soap box....I wont go so far...I just want you to know....
My soapbox is more directed at the AHA.....someday I might ramble about it. (or maybe I have already here....hmm I see an AHA tag...I think I have)
I know the person that started the CHD awareness Day....I spent many years working hard to promote it...only to find the AHA had more money and more lobby power...and could never get a president to declare it...Got the Governor (not the governator...go figure he has a heart defect) and the mayor of Irvine and quite frankly, became jaded and have focused my efforts elsewhere...
Over the years, I have met many people who have had siblings with CHDs, some have passed away and even then they had no idea how common they are.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With this being CHD Awareness Week (& the 14th is CHD Awareness Day) I am going to take a moment and stand on my soap box, please bear with me here.
Most all know that February is National Heart Month. We are all familiar with wear Red Dress Day, we are all familiar of the importance of understanding adult and youth acquired heart disease. It is a well known fact that heart disease is the #1 killer among women. Because everyone relates February with Valentine's Day and love, chocolate candy hearts, and the color red it only makes sense February would be chosen as National Heart Month. But if you were to go ask the average person on the street if they ever heard of Congenital Heart Defects, I am sure your response would be quite different from those about acquired heart disease.
By no means do we want to down play the importance of acquired heart disease and the need for prevention and intervention. But we do need to make aware the need for more research and awareness to those who are BORN with Congenital Heart Defects. It was not lifestyle or age that brought on these defects, and there was no way to stop it from happening.
To the parents who have a child born with a heart defect it is mind blowing how little awareness there is for the #1 Most Common Birth Defect. There has, fortunately, been a greater amount of funding going into CHD research, however, there is still a much greater need for more.
Please help join in the Awareness this week and pass this on.
1. Congenital Heart Defect (CHD) is a defect of the heart present at birth.
2. CHD's are the #1 most common birth defect, affecting 1 in every 100 babies born.
3. CHD's are the #1 most common cause of infant death related to birth defects within the first year of life.
4. There are at least 35 different known Congential Heart Defects.
5. 1 in 10 born with a CHD will have a fatal defect.
6. There is no known cause for CHD's, however, genetics and environmental factors can play a role in the defects. Scientist have been able to discover over 100 mutations that are directly linked to the heart.
7. There is no known cure or prevention for CHD's. Most born with heart defects will require some form of palliative surgical intervention.
8. Through research and medical advancements the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was.
9. There are an estimated 1 - 1.2 million living with a CHD in the US.
10. Nearly twice as many children die each year from CHD's, than from all forms of childhood cancers combined. (Yet Max has both)
Spread the word and wear your Red & Blue on Feb. 14th
My soapbox is more directed at the AHA.....someday I might ramble about it. (or maybe I have already here....hmm I see an AHA tag...I think I have)
I know the person that started the CHD awareness Day....I spent many years working hard to promote it...only to find the AHA had more money and more lobby power...and could never get a president to declare it...Got the Governor (not the governator...go figure he has a heart defect) and the mayor of Irvine and quite frankly, became jaded and have focused my efforts elsewhere...
Over the years, I have met many people who have had siblings with CHDs, some have passed away and even then they had no idea how common they are.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
With this being CHD Awareness Week (& the 14th is CHD Awareness Day) I am going to take a moment and stand on my soap box, please bear with me here.
Most all know that February is National Heart Month. We are all familiar with wear Red Dress Day, we are all familiar of the importance of understanding adult and youth acquired heart disease. It is a well known fact that heart disease is the #1 killer among women. Because everyone relates February with Valentine's Day and love, chocolate candy hearts, and the color red it only makes sense February would be chosen as National Heart Month. But if you were to go ask the average person on the street if they ever heard of Congenital Heart Defects, I am sure your response would be quite different from those about acquired heart disease.
By no means do we want to down play the importance of acquired heart disease and the need for prevention and intervention. But we do need to make aware the need for more research and awareness to those who are BORN with Congenital Heart Defects. It was not lifestyle or age that brought on these defects, and there was no way to stop it from happening.
To the parents who have a child born with a heart defect it is mind blowing how little awareness there is for the #1 Most Common Birth Defect. There has, fortunately, been a greater amount of funding going into CHD research, however, there is still a much greater need for more.
Please help join in the Awareness this week and pass this on.
1. Congenital Heart Defect (CHD) is a defect of the heart present at birth.
2. CHD's are the #1 most common birth defect, affecting 1 in every 100 babies born.
3. CHD's are the #1 most common cause of infant death related to birth defects within the first year of life.
4. There are at least 35 different known Congential Heart Defects.
5. 1 in 10 born with a CHD will have a fatal defect.
6. There is no known cause for CHD's, however, genetics and environmental factors can play a role in the defects. Scientist have been able to discover over 100 mutations that are directly linked to the heart.
7. There is no known cure or prevention for CHD's. Most born with heart defects will require some form of palliative surgical intervention.
8. Through research and medical advancements the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was.
9. There are an estimated 1 - 1.2 million living with a CHD in the US.
10. Nearly twice as many children die each year from CHD's, than from all forms of childhood cancers combined. (Yet Max has both)
Spread the word and wear your Red & Blue on Feb. 14th
Wednesday, January 14, 2009
Some things suck
http://www.0ddness.co.uk/2009/01/happy-birthday-for-angel.html#comments
This is a friend of mine's blog. I have known him for over 8yrs now. I met him thru a heart list.
Heart Defect suck. Sure I have made many great friends and met many people but, this is where they suck.
This certainly wasnt the first, nor will it be the last child I know of who dies but damnit...it makes me tear up every time I think of her. Not just for the loss but for the gigantic hole it has left in my friends life.
Cherish your moments, cherish your time.
Its late, I am tired and gosh darn it...there is something in my eye...
I could leave you with lots of facts but, the one that I think is most telling....Congenital heart defects affect 1 out of every 100 babies born. March of dimes lists CHDs in the top causes of Infant death. Some are severe, some are not...Some get lucky.
Bethy wasnt an infant....and she was lucky for only a short amount of time. Those she touched were lucky to have known her. And if you believe in fate...perhaps you can throw that in there too.
She left behind a mom, a dad (my friend) a loving brother and the baby sister she never met. She touched many lives in her short time.
Happy Birthday Little Moo.
This is a friend of mine's blog. I have known him for over 8yrs now. I met him thru a heart list.
Heart Defect suck. Sure I have made many great friends and met many people but, this is where they suck.
This certainly wasnt the first, nor will it be the last child I know of who dies but damnit...it makes me tear up every time I think of her. Not just for the loss but for the gigantic hole it has left in my friends life.
Cherish your moments, cherish your time.
Its late, I am tired and gosh darn it...there is something in my eye...
I could leave you with lots of facts but, the one that I think is most telling....Congenital heart defects affect 1 out of every 100 babies born. March of dimes lists CHDs in the top causes of Infant death. Some are severe, some are not...Some get lucky.
Bethy wasnt an infant....and she was lucky for only a short amount of time. Those she touched were lucky to have known her. And if you believe in fate...perhaps you can throw that in there too.
She left behind a mom, a dad (my friend) a loving brother and the baby sister she never met. She touched many lives in her short time.
Happy Birthday Little Moo.
Saturday, August 30, 2008
Camp
Rebekah headed off to Camp Del Corazon (www.campdelcorazon.org ) again this past week. This week was on Catalina Island. I forget the name of the actual camp ground but as I understand it, it is way on the tip. She left out of Marina del Rey Monday morning and got back Friday at 3pm. She had a blast as usual. She said Tom Arnold was there again this year. She knew her counselor from outside of camp. We actually attended Jeni's (aka ouch babe for camp purposes) wedding. Rebekah seems to have picked up a bit of a stuffy nose. And told tales of things she did at night....which make me want to cringe because that indicates, she was staying up.ggggrrr...I know how much of a pain she can be when she does that.
And as part of our tradition when we pick a kid up from camp, they get to pick dinner. So, last night we ate at Benihana's.
If you go to nursetv.com, there is a video there about the nurses at camp. At about 3 min 30 seconds you see the back of rebekah lol...pink polkadot shirt, short blond hair.
And as part of our tradition when we pick a kid up from camp, they get to pick dinner. So, last night we ate at Benihana's.
If you go to nursetv.com, there is a video there about the nurses at camp. At about 3 min 30 seconds you see the back of rebekah lol...pink polkadot shirt, short blond hair.
Sunday, June 22, 2008
Camp etc (updated at 2:10pm)
Tomorrow, Rebekah heads out to Camp Del Corazon and so begins the summer. We drop her off at 10am-ish tomorrow and pick up at 1pm friday.
She can't wait. She was up at 7am this morning wanting to pack. That will make for one very long day today.....as the day wears on between the lack of sleep and the heat....she is going to be one cranky girl, which leads to one cranky mommmy.
So, today's to do list:
Take sleeping bag out of box. Set flannel liner aside (will be needed for Christine's camp and later Camp Del Corazon session both on Catalina but not for this one)
Fill out camp forms
pack
grocery shopping
guess I should make a shopping list first
make DH's route for tuesday (normally monday AM chore but no time and I need to call the people before we leave tomorrow)
cut the cat nails(because he decided bright and early this morning to try and scale my backside)
cat box
I have a hundred other little things I could also do....maybe I will get to them....
filing
parts orders
voice mail
paperwork DH is supposed to give to me
laundry of course (but cant be done til packing is done...I fold clothes on my bed....same surface is used for packing)
make jam (with fruit I will buy at store #2, if it is ripe, if not this will have to wait another day)
I would like to read but, can't decide what to read next.....
What else can I ramble about?
On Friday, we saw "The Bodies Exhibit 3" at the Science Center. This one focused on hearts, sorta.....It was actually very interesting.....including smoker's lung and LEG...I had no clue there was smoker's leg. As for hearts, they had Hypertrophied heart, a VSD, a heart and its pacemaker, the abiocor LVAD and the berlin heart. They also had some arteries with CAD. They had whole bodies with just the bones and all the vessels....wow we have alot of blood vessels! Nathan had to inspect all the models to determine which were boys and which were girls. And also decided to read LOUDLY the description of the testes on display. In the end, Nathan insisted we needed a video of the exhibit. I believe the video also talks about the process used for preservation.
Our next field trip is to the Getty Center in a few weeks. I have never been there so, it should be at least interesting. I have 2 that enjoy art....although Rebekah prefers pop art (the warhol exhibit in San Diego was a hit some time back)
After that we have one planned at the Muzeo that is on Jane Goodall and her chimps. None planned at the moment for after that.....I don't have a fall calendar...and I am not sure what days Christine will be in class in the fall. When that is settled, we can work on fall trips.
She can't wait. She was up at 7am this morning wanting to pack. That will make for one very long day today.....as the day wears on between the lack of sleep and the heat....she is going to be one cranky girl, which leads to one cranky mommmy.
So, today's to do list:
grocery shopping
make DH's route for tuesday (normally monday AM chore but no time and I need to call the people before we leave tomorrow)
cat box
I have a hundred other little things I could also do....maybe I will get to them....
filing
parts orders
voice mail
paperwork DH is supposed to give to me
laundry of course (but cant be done til packing is done...I fold clothes on my bed....same surface is used for packing)
make jam (with fruit I will buy at store #2, if it is ripe, if not this will have to wait another day)
I would like to read but, can't decide what to read next.....
What else can I ramble about?
On Friday, we saw "The Bodies Exhibit 3" at the Science Center. This one focused on hearts, sorta.....It was actually very interesting.....including smoker's lung and LEG...I had no clue there was smoker's leg. As for hearts, they had Hypertrophied heart, a VSD, a heart and its pacemaker, the abiocor LVAD and the berlin heart. They also had some arteries with CAD. They had whole bodies with just the bones and all the vessels....wow we have alot of blood vessels! Nathan had to inspect all the models to determine which were boys and which were girls. And also decided to read LOUDLY the description of the testes on display. In the end, Nathan insisted we needed a video of the exhibit. I believe the video also talks about the process used for preservation.
Our next field trip is to the Getty Center in a few weeks. I have never been there so, it should be at least interesting. I have 2 that enjoy art....although Rebekah prefers pop art (the warhol exhibit in San Diego was a hit some time back)
After that we have one planned at the Muzeo that is on Jane Goodall and her chimps. None planned at the moment for after that.....I don't have a fall calendar...and I am not sure what days Christine will be in class in the fall. When that is settled, we can work on fall trips.
Tuesday, January 15, 2008
I don't know what to say
I'm really spent as of late....and I can't muster a good and decent and DESERVING post...
So for today's post....I will give you links...links to words about a beautiful little girl born 7yrs ago today
http://www.0ddness.co.uk/2008/01/to-special-angel.html
Her daddy's birthay wishes
http://jo-rant.blogspot.com/2008/01/happy-birthday-bethy.html
her mum's birthday wishes
http://driedpapercutsandchickens.blogspot.com/2007/02/today.html
mine thoughts from last year....but not on her birthday
http://rhythmunbroken2.blogspot.com/2007/01/happy-birthday-bethy.html
My daughter's thoughts from last year
Happy birthday, Little moo! We miss you here but, I am sure you are running and play til your little heart is content....never stopping to catch your breath or cool off or warm up ...no more meds. I guess your time with us was done...but, I wish for your mummy and daddy, it was not.
***disclaimer #1....should you follow the links, you might choose to read them when at home, at work or while sitting on hold for you satellite companies are not good times. If you have your own children, you will prob want them near, because you will want to give them a good squeeze when you are done reading***
***disclaimer #2, out of respect for my friends, I have kept this post religious belief free***
So for today's post....I will give you links...links to words about a beautiful little girl born 7yrs ago today
http://www.0ddness.co.uk/2008/01/to-special-angel.html
Her daddy's birthay wishes
http://jo-rant.blogspot.com/2008/01/happy-birthday-bethy.html
her mum's birthday wishes
http://driedpapercutsandchickens.blogspot.com/2007/02/today.html
mine thoughts from last year....but not on her birthday
http://rhythmunbroken2.blogspot.com/2007/01/happy-birthday-bethy.html
My daughter's thoughts from last year
Happy birthday, Little moo! We miss you here but, I am sure you are running and play til your little heart is content....never stopping to catch your breath or cool off or warm up ...no more meds. I guess your time with us was done...but, I wish for your mummy and daddy, it was not.
***disclaimer #1....should you follow the links, you might choose to read them when at home, at work or while sitting on hold for you satellite companies are not good times. If you have your own children, you will prob want them near, because you will want to give them a good squeeze when you are done reading***
***disclaimer #2, out of respect for my friends, I have kept this post religious belief free***
Saturday, September 01, 2007
Rebekah is home
From Camp....
Camp del Corazon.
She had a blast as usual. Her counselors told us she was really afraid of the dark, which puzzled us but they said it was REALLY dark with outdoor noises so, maybe that freaked her out. AND that another girl in the cabin wanted complete darkness to sleep.
And now she is antsy at home, making a PITA of herself which is her usual MO after being gone.
I overhead one of the counselors telling about a special guest on the island. So, on the way home I asked rebekah about it. She said oh yah I remember him, we ate with him and he stayed all week. The guest? Tom Arnold. In recent years he has been a big supporter of the camp, even hosting the gala as I recall.
She wore her dress for fancy dinner night, as often as they would let her she says. Good thing it came from goodwill. And has learned this fantasically annoying song on disco night. Hmm I should look for it on Youtube.
She also said she climbing the climbing wall this time. Last time she was too scared....perhaps because last time she refused to wear her glasses. I told the counselors before I left that they are pretty manditory for her to see.
She was happy that she wasnt the only oddball this time. By oddball, I mean the only one in her cabin skipped during med times....
Last time she filled her disposable camera so, I gave her 2 this time. She didnt fill either of them....
Camp del Corazon.
She had a blast as usual. Her counselors told us she was really afraid of the dark, which puzzled us but they said it was REALLY dark with outdoor noises so, maybe that freaked her out. AND that another girl in the cabin wanted complete darkness to sleep.
And now she is antsy at home, making a PITA of herself which is her usual MO after being gone.
I overhead one of the counselors telling about a special guest on the island. So, on the way home I asked rebekah about it. She said oh yah I remember him, we ate with him and he stayed all week. The guest? Tom Arnold. In recent years he has been a big supporter of the camp, even hosting the gala as I recall.
She wore her dress for fancy dinner night, as often as they would let her she says. Good thing it came from goodwill. And has learned this fantasically annoying song on disco night. Hmm I should look for it on Youtube.
She also said she climbing the climbing wall this time. Last time she was too scared....perhaps because last time she refused to wear her glasses. I told the counselors before I left that they are pretty manditory for her to see.
She was happy that she wasnt the only oddball this time. By oddball, I mean the only one in her cabin skipped during med times....
Last time she filled her disposable camera so, I gave her 2 this time. She didnt fill either of them....
Thursday, March 01, 2007
for a cause.....
Tis the season, I suppose....
I have received a few emails about walk athon, jog a thon etc type of things....I thought I would share them here for anyone interested.
For Diabetes, a bikeathon
For Breast Cancer
I am sure to get more, I usually get a March of Dimes one too.....
Also I have 2 "up-trade" sites:
Money for old rope
He currently has a football/soccer jersey up for trade...He started with a piece of rope
next is
Special zipper
Currently the item up for trade is a set of Dennis Lillee prints
Tim started with a zipper.
But, here is a really simple one for ya'...all you have to do is your normal grocery shopping, if you have an Albertsons card....AND if you already have your albertsons card linked to some organization, you can actually split the donations between up to 3 groups and determine which percentage each one gets.
Albertson's Community Partners
Just link your Albertson's Savings Card to California Heart Connection and you will help us every time you shop! Just call 1-877-932-7948 to link your Albertson's card to us - or do it online:
1. Go to Albertsons Community Partners.
2. Log In - enter your Albertsons number and your phone number
3. Click on 'Find A Partner" and search for "California Heart Connection"
4. Choose California Heart Connection - that's it!
Ok enough worthy cause for awhile from me ......
unless you shop at amazon, then I will add one more....
go to www.caheartconnection.org
scroll down to the amazon link, click on it and shop.....as long as you click thru that link, amazon gives California Heart Connection a bit of the profit.
If anyone else has something I missed, leave a comment and let me know, unless it is an AHA walk....then to quote dan "bugger off"
I have received a few emails about walk athon, jog a thon etc type of things....I thought I would share them here for anyone interested.
For Diabetes, a bikeathon
For Breast Cancer
I am sure to get more, I usually get a March of Dimes one too.....
Also I have 2 "up-trade" sites:
Money for old rope
He currently has a football/soccer jersey up for trade...He started with a piece of rope
next is
Special zipper
Currently the item up for trade is a set of Dennis Lillee prints
Tim started with a zipper.
But, here is a really simple one for ya'...all you have to do is your normal grocery shopping, if you have an Albertsons card....AND if you already have your albertsons card linked to some organization, you can actually split the donations between up to 3 groups and determine which percentage each one gets.
Albertson's Community Partners
Just link your Albertson's Savings Card to California Heart Connection and you will help us every time you shop! Just call 1-877-932-7948 to link your Albertson's card to us - or do it online:
1. Go to Albertsons Community Partners.
2. Log In - enter your Albertsons number and your phone number
3. Click on 'Find A Partner" and search for "California Heart Connection"
4. Choose California Heart Connection - that's it!
Ok enough worthy cause for awhile from me ......
unless you shop at amazon, then I will add one more....
go to www.caheartconnection.org
scroll down to the amazon link, click on it and shop.....as long as you click thru that link, amazon gives California Heart Connection a bit of the profit.
If anyone else has something I missed, leave a comment and let me know, unless it is an AHA walk....then to quote dan "bugger off"
Wednesday, February 21, 2007
Today
Today it has been 2 years since a dear friends daughter died. She was a beautiful, spirited little girl...so much like my own middle child also afflicted with a congenital heart defect that try and she might, she just couldn't overcome.
I met her dad, her mom and her before she was even born. I consider them dear friends who will certainly get a visit from me if I ever make it to England(better move now and leave no forwarding address, Dan). And her passing is prob one of the ones that affects me the most. I saved most of the emails received during her final stay in the hospital. And even re-reading them brings a tear to my eye. I wanted so much for this not to happen to my friend. I have seen it happen to many, I have attended funerals for some but none have ever hit me so hard. I remember my phone ringing in the very very early morning hours, bringing me the horrible news. I remember it like it was yesterday, not 2 yrs ago. I couldn't tell you what was said but, gosh do I remember it. Phone calls in the middle of the night never bring good news. I remember when our upstairs phone broke and I insisted on replacing it because you cant hear the other phone in our bedroom and I would never want to miss one of those calls.
I know my grief pales in comparision to her mum and dads. I just can't imagine what they feel. I would like to be able to say, that she obviously had a purpose here and without her I would have never have met her parents but, it is so hard to say...she was just an innocent and beautiful little girl.
I would insert a picture here but I don't know how.
I encourage anyone who might read my blog (I don't think their are many that don't already read Dan's)to visit Dans blog....it is at the side and is called "0ddness". Read his beautiful tribute to a beautiful girl and take a look at some of her photos.
I hate CHDs....but sadly they have brought me some of my dearest friends. Friends I am glad to have but I wish I had never met.
I met her dad, her mom and her before she was even born. I consider them dear friends who will certainly get a visit from me if I ever make it to England(better move now and leave no forwarding address, Dan). And her passing is prob one of the ones that affects me the most. I saved most of the emails received during her final stay in the hospital. And even re-reading them brings a tear to my eye. I wanted so much for this not to happen to my friend. I have seen it happen to many, I have attended funerals for some but none have ever hit me so hard. I remember my phone ringing in the very very early morning hours, bringing me the horrible news. I remember it like it was yesterday, not 2 yrs ago. I couldn't tell you what was said but, gosh do I remember it. Phone calls in the middle of the night never bring good news. I remember when our upstairs phone broke and I insisted on replacing it because you cant hear the other phone in our bedroom and I would never want to miss one of those calls.
I know my grief pales in comparision to her mum and dads. I just can't imagine what they feel. I would like to be able to say, that she obviously had a purpose here and without her I would have never have met her parents but, it is so hard to say...she was just an innocent and beautiful little girl.
I would insert a picture here but I don't know how.
I encourage anyone who might read my blog (I don't think their are many that don't already read Dan's)to visit Dans blog....it is at the side and is called "0ddness". Read his beautiful tribute to a beautiful girl and take a look at some of her photos.
I hate CHDs....but sadly they have brought me some of my dearest friends. Friends I am glad to have but I wish I had never met.
Thursday, February 08, 2007
American Heart Association & CHD's
Please read the following post....it is as close as I get to a CHD awareness week post, should you be moved to do something, or give something, visit the links in the side bar for how you can. California Heart Connection is a local support group I co-founded.....
CHIN, I also belong to, it is a nationwide support group.
****this is stolen from a friend, with her permission****
Why donate to an organization that does little for CHD Research, Support,
Awareness and Education,
when you can donate to CHIN or CHF which is only about CHD??
The same conversation every year... It doesn't change at all.
The AHA in general (as there are a very few good offices) does not promote
CHD at all. This year they have changed CHD to CCD and mentions it on many
of their press releases:
Excerpt from an AHA email :
PS- In honor of Day of Hearts- Congenital Heart Defect Day- on February
14th, invite a friend to join the _You're the Cure_
(http://www.capitolconnect.com/yourethecure/index.aspx) network.
Yet, when you go to You're the Cure, it is only about acquired heart
disease, strokes and Go Red.
Excerpt from their site:
Heart Disease and Stroke Research
The National Institutes of Health (NIH), America’s premier medical research
facility, supports research dedicated to “acquiring new knowledge to help
prevent, detect, diagnose and treat disease and disability.”
Heart disease, stroke and other cardiovascular diseases remain America’s
leading cause of death. They affect more than 71 million Americans and cost this
nation more than any other disease. Despite the enormous burden these
diseases place on our nation, NIH heart and stroke research remains
disproportionately under funded, especially in light of the many promising scientific
opportunities that could advance the fight against these diseases.
The NIH invests only 7 percent of its budget on heart research and a mere 1
percent on stroke research. Please help us dramatically increase funding for
NIH heart and stroke research.
The AHA has added Congenital Cardiovascular Disease (notice name change) to
most of their documents including the national proclamation. Though it is
added, there is nothing mentioned regarding it. I believe and again this is
my opinion, that there is not a cure for CHD and their whole
concept is be the cure!
_http://www.whitehouse.gov/news/releases/2007/02/20070201-2.html_
(http://www.whitehouse.gov/news/releases/2007/02/20070201-2.html)
American Heart Month, 2007
A Proclamation By the President of the United States of America
Heart disease is the leading cause of death in the United States, claiming
hundreds of thousands of lives each year. During American Heart Month, we renew
our commitment to fighting cardiovascular disease by increasing public
awareness of this deadly disease and understanding of how it can be prevented.
(http://www.whitehouse.gov/news/releases/2007/02/images/20070201-2_d-0245-6-700v.html) Today, millions of Americans live with some form of cardiovascular
disease, including congenital heart disease, coronary heart disease, and
high blood pressure. Individuals can reduce their chance of developing these and
other types of heart disease by exercising regularly, maintaining healthy
eating habits and weight, avoiding tobacco use, and monitoring cholesterol and
blood pressure levels. All Americans should speak with their doctors about
the dangers of this disease and get regular preventive screenings.
Where does the underlined benefit CHD??
and trust me, it took us years to get CHD added by writing the White House
consistently every year.. I am not sure what year they started, I believe
2005. and that was due to my many conversations with the staff and the letters
each one of us wrote.
C.H.I.N. is a national organization that provides reliable information,
support services, financial assistance and resources to families of children with
congenital heart defects and acquired heart disease, adults with congenital
heart defects, and the professionals who work with them.
CHF's Role in the Fight Against Congenital Heart Defects
We believe that research is the best way to win the battle against
congenital heart defects – research that will impact children now and in the future
and ultimately save lives. To date, The Children's Heart Foundation has funded
_30 research projects_
(http://childrensheartfoundation.org/research_funded.htm) with $2.5 million. Each year, we fund the most promising congenital heart
defect research under the direction of our Medical Advisory Board – 31
leading doctors in the fields of cardiology, pediatrics and cardio-thoracic
surgery.
The most bothersome is they rent their membership lists!
_http://www.americanheart.org/presenter.jhtml?identifier=10000046&title=Reques
t to Rent Membership Lists_
(http://www.americanheart.org/presenter.jhtml?identifier=10000046&title=Request%20to%20Rent%20Membership%20Lists)
Being a member of CHIN, I need not worry about confidentiality!
So I ask again, why donate to an organization that does little for CHD
Research, Support, Awareness and Education, when you can donate to CHIN or CHF
which is only about CHD??
CHIN, I also belong to, it is a nationwide support group.
****this is stolen from a friend, with her permission****
Why donate to an organization that does little for CHD Research, Support,
Awareness and Education,
when you can donate to CHIN or CHF which is only about CHD??
The same conversation every year... It doesn't change at all.
The AHA in general (as there are a very few good offices) does not promote
CHD at all. This year they have changed CHD to CCD and mentions it on many
of their press releases:
Excerpt from an AHA email :
PS- In honor of Day of Hearts- Congenital Heart Defect Day- on February
14th, invite a friend to join the _You're the Cure_
(http://www.capitolconnect.com/yourethecure/index.aspx) network.
Yet, when you go to You're the Cure, it is only about acquired heart
disease, strokes and Go Red.
Excerpt from their site:
Heart Disease and Stroke Research
The National Institutes of Health (NIH), America’s premier medical research
facility, supports research dedicated to “acquiring new knowledge to help
prevent, detect, diagnose and treat disease and disability.”
Heart disease, stroke and other cardiovascular diseases remain America’s
leading cause of death. They affect more than 71 million Americans and cost this
nation more than any other disease. Despite the enormous burden these
diseases place on our nation, NIH heart and stroke research remains
disproportionately under funded, especially in light of the many promising scientific
opportunities that could advance the fight against these diseases.
The NIH invests only 7 percent of its budget on heart research and a mere 1
percent on stroke research. Please help us dramatically increase funding for
NIH heart and stroke research.
The AHA has added Congenital Cardiovascular Disease (notice name change) to
most of their documents including the national proclamation. Though it is
added, there is nothing mentioned regarding it. I believe and again this is
my opinion, that there is not a cure for CHD and their whole
concept is be the cure!
_http://www.whitehouse.gov/news/releases/2007/02/20070201-2.html_
(http://www.whitehouse.gov/news/releases/2007/02/20070201-2.html)
American Heart Month, 2007
A Proclamation By the President of the United States of America
Heart disease is the leading cause of death in the United States, claiming
hundreds of thousands of lives each year. During American Heart Month, we renew
our commitment to fighting cardiovascular disease by increasing public
awareness of this deadly disease and understanding of how it can be prevented.
(http://www.whitehouse.gov/news/releases/2007/02/images/20070201-2_d-0245-6-700v.html) Today, millions of Americans live with some form of cardiovascular
disease, including congenital heart disease, coronary heart disease, and
high blood pressure. Individuals can reduce their chance of developing these and
other types of heart disease by exercising regularly, maintaining healthy
eating habits and weight, avoiding tobacco use, and monitoring cholesterol and
blood pressure levels. All Americans should speak with their doctors about
the dangers of this disease and get regular preventive screenings.
Where does the underlined benefit CHD??
and trust me, it took us years to get CHD added by writing the White House
consistently every year.. I am not sure what year they started, I believe
2005. and that was due to my many conversations with the staff and the letters
each one of us wrote.
C.H.I.N. is a national organization that provides reliable information,
support services, financial assistance and resources to families of children with
congenital heart defects and acquired heart disease, adults with congenital
heart defects, and the professionals who work with them.
CHF's Role in the Fight Against Congenital Heart Defects
We believe that research is the best way to win the battle against
congenital heart defects – research that will impact children now and in the future
and ultimately save lives. To date, The Children's Heart Foundation has funded
_30 research projects_
(http://childrensheartfoundation.org/research_funded.htm) with $2.5 million. Each year, we fund the most promising congenital heart
defect research under the direction of our Medical Advisory Board – 31
leading doctors in the fields of cardiology, pediatrics and cardio-thoracic
surgery.
The most bothersome is they rent their membership lists!
_http://www.americanheart.org/presenter.jhtml?identifier=10000046&title=Reques
t to Rent Membership Lists_
(http://www.americanheart.org/presenter.jhtml?identifier=10000046&title=Request%20to%20Rent%20Membership%20Lists)
Being a member of CHIN, I need not worry about confidentiality!
So I ask again, why donate to an organization that does little for CHD
Research, Support, Awareness and Education, when you can donate to CHIN or CHF
which is only about CHD??
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