NATIONAL SARCOIDOSIS AWARENESS DAY, AUGUST 29, 2009

Greetings everyone,

I have been living with Sarcoidosis since 1996; I have great doctors through the Cleveland Clinic, in Ohio.

National Sarcoidosis Day is August 29, 2009 and although the new year is not here yet, now is the time that we should start advocacy about the disease, how it affects our bodies and the need for research and qualified doctors.

Won't you help by marking your 2009 calendar today and making an effort to contact your local congressman/woman to make the community more aware of our plight?

It all starts with us; those who suffer and deal with the sarc monster everyday.

All the best to each of you for a blessed New Year!

Madonna

PS Remember August 29!

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22 replies. Join the discussion

Thank you, I just placed it in my palm pilot and will start looking for a new pulmonary dr in 2009 and we will see if I need more after that.

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i also placed the date in my daily planner tyvm

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I certainly can't forget the date because of the irony. That is my birthday.
Thanks

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Is this the first year for sarcoidosis awareness day? I was just wondering about if the USA even did have one or not.

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Thanks for reminding us about it. This past year I had it runned in the local paper. They did not charge me anything for this. Then I had several people around call me about it. Also, don't forget that Avon has the snowflake earrings so that we can wear all year and tell peple about sarcoidosis. (Remember that no two snow flakes are alike and no two cases of sarcoid is alike.) I got two (different design) pair this past week from my avon lady. Have some more ordered to give as gifts. Get them before it is to late. Take care. God Bless!

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I put this on my calendar........ellen

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Thanks for the responses everyone! Keep spreading the word - here is some good news, it is listed in the CHASE CALENDAR of events for 2009. It has always been on August 29 and was sanctioned by George Bush under national proclaimation, so it is official. Texan-N-Ga, it is your birthday???? That is awesome now we can celebrate and advocate.

Again, I encourage everyone to write your congressman/woman to make something happen in your respective states. I am going to make something happen in OHIO. Because I am in the media, sometimes I can make things happen.

I was just thrown for a loop when we lost Bernie Mac and Sean LeVert, both I have had the opportunity to have met.

Take care everyone and continue the positive fight against Sarcoidosis - - oh how I look forward to my methotrexate this weekend!!

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April is also known as Sarcoidosis Month you can use this whole month to advocate for Sarcoidosis.

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This is the website were you can read were Congress accepted the month of April is recognized as National Sarcoidosis Awareness month this past April was the first one.
www.govtrack.us/congress/record.xpd?id=110-h2008..

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Put it on all my calendars Linda

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Thanks PurpleSnowflake! When I tried to pull up the web site I received an error, can you give me another site? I heard about April being National Sarcoidosis Awareness Month but did not find a proclaimation. I found that a presidential proclaimation trumps a congressional proclaimation...heck let's be aware year round if you know what I mean. (smile)
Happy New Year everyone!

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Here here! Thanks for the reminder it's never too early to plan for this.

Also there are FRS events in Chicago and Bernie mac foundation is also planning events in chi town, PA, and LA. I plan to make the PA one but there is no date yet. I emailed them so when I get more info I'll let you guys know. In the UK they planned something where they got the attention of the local media, I think that was great we should do the same thing in our respective communities on that day

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Greetings,

I don't know how this would work either, but I would suggest you e-mail Debbie at the headquarters in Chicago, give her your idea and take it from there. Sounds nice. I am not in to scrapbooking, but there are many who are. You may be on to something here!
All the best,
Madonna

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Try this link,
i hope it works

http://www.govtrack.us/congress/bill.xpd?bill=hr110-1149

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Madonna thanks for the reminder, last year i posted signs up in the restaurant to bring awareness i even bought braclets from the FSR site with a facts and statistics sheet and i put them in a basket and customers would donate money then i mailed them a check.

Thanks
Connie

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Thank you for the link kooks. Everyone should be aware that this is just a "House Resolution". Not a Bill or Law. It is kind of like Congress saying Happy Birthday. It is nice to have the recognition but we need to realize that this type of thing doesn't usually last past the day it was brought up. It was a voice vote and they didn't even record who voted. Thanks to the Illinois Congressman Danny Davis for his support and whoever contacted him with this request. We need to push for more of this but with funding and research bills attached.

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Also, according to this website,
http://www.alaha.org/uploadedFiles/Resources/2009%20Health%20Dates.pdf October 1-7,2009 is Saroidosis Awareness Week.

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ah from my research and Keith's awareness day is Oct 4.
http://www.mcanonline.org/resources/pdf/2008nationalhealthobservances.pdf

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Oops yes sorry I meant 4th Oct (see UK post)

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Our group has also started a petition in the US and would appreciate everyone signing it. Once we have met our goal it will be forwarded to those we are finding will make a difference in government and the medical field. We need to educate them so we do not have to keep suffering in silence.
http://www.thepetitionsite.com/1/sarcoidosis-it-hurts

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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