RSD Quilt
Page 1 of 1
RSD Quilt
byrd45 Mon Feb 02, 2009 3:27 pm
Awareness Ideas : FWD: RSDhope-Faces of RSD Quilt
Choose another message board
Prev Discussion Next Discussion Delete
Reply
Recommend Delete Message 1 of 2 in Discussion
From: byrd45 (Original Message) Sent: 5/26/2005 11:02 AM
GOOD MONDAY ALL!
Keith here from American RSDHope with some exciting updates!
This update is pretty much a newsletter there is so much packed into it. You will definitely want to share this with your groups and their members so feel free to print it out. I will send the second part out tomorrow, Tuesday, and that is the one with most of the updates.
I hope you had a great weekend.
Because there is so much to share I have broken this update into two parts. This first part is solely dedicated to one project, a very special project that we feel could really put RSD Awareness on TV and get some strong Publicity, give us a chance to tell our story, and in a positive light that so many television shows seem to be searching for.
THE "FACES OF RSD QUILT" "THINKING BACK AND LOOKING FORWARD"
I think some of you have heard snippets here and there about a Quilt project, we have been finalizing some details and are ready to officially announce the project is now open and ready to roll!
We have a special page set up on the website, the link is below, but here are some of the basics.
The Quilt Project is the brainchild of Janice Novak and she has generously asked American RSDHope to spearhead this project. But it will take the cooperation of every group, every RSD patient out there to make it happen because when Janice makes a quilt, JANICE MAKES A QUILT!
OUR GOAL IS 1,000 SQUARES!
Each 1 foot x 1 foot. That's a lot of squares and a lot of RSD patients.
WE WANT TO LITERALLY COVER A FOOTBALL FIELD WITH THE FINISHED QUILT!
You can read Janice's whole story on the webpage but here is her inspiration for the quilt.
----------------------------------------------------
"I finally accepted the fact that yes I have RSD and started trying to learn all that I could about this horrific disease and I am still learning. This past winter I sat in my home severely depressed and would get up in the mornings and keep all the curtains shut drawn and would just sit in the dark. I did this all winter long.
It wasn't until about a month ago that I decided that I wasn't going to let the RSD take control of my life, I was going to take control of it!
I sat here and thought, "What can I do to help others in the same situation?". That is when I came up with the idea of the quilt. I thought well, it would give all of us that are at home something to do and something to look forward to. I also thought about all the emails that I have received about getting this disease out in the public. I feel that it really is a necessity to do that as we all know that aggressive treatment is the only thing that will help.
So making the quilt as big as I want I felt would get us the media attention that we need. It would also give me the drive to open the curtains, to have a goal to reach and to make me feel like I am still able to help others. Although not in the way I have had for 23 years but in other ways.
I have made a promise to myself and now to other RSD'ers that I WILL IF IT IS THE LAST THING I DO MAKE THIS DISEASE KNOWN! I don't care how much pain this will cause me, if succeed and meet my goal it will be all worth it.
I searched for groups on the internet so that I could speak with others about this disease and I found our group, (RSDHope)
This group has been a life saver and the members in it and they have given me the drive to do something that I pray will help us all. I don't sleep much due to the pain and twitching and sweating so have plenty of time on my hands to take care of this project."
(Gee, an RSD patient who can't sleep, go figure. hee hee.)
This disease will be well known and not only our members but all RSD patients across the country will get the recognition they deserve for the fight they have to do on a daily basis.
Also I promise I am letting all the people I worked with as a paramedic know that there are people out there with this disease and how to handle these people. It makes me cringe at the thought that I could have been hurting people when I thought I was helping them due to the fact that I didn't know about this disease. This is what we have to change about this disease, ignorance. So, won't you help me fulfill my dream?
Janice Novak
---------------------------------------------------------------
WHO IS THE QUILT DEDICATED TO ?
This Quilt is dedicated to ALL patients and loved ones everywhere, not just RSDHope's, or RSDSA's, or For Grace's, or Martyn's, or ANY individual Organization or group, but to every patient and every loved one who has ever worked to spread awareness of RSD, or to raise research money, the Doctors and Nurses, the support group leaders; all the fighters out there; this is for everyone who ever raised a hand against the monster called RSD, and most of all this is dedicated to all of those we have lost along the way who fought until they could fight no more.
That is why this Quilt is so big, it represents so many people and so much work over many, many years.
WHO CAN BE INVOLVED IN GETTING THE WORD OUT ?
Well, I think if you just look at all of the above that is who IS going to be involved as always! We have an extremely active Community this year. I don't mean just our organization, I mean the RSD Community. So many things are happening around the country this year.
Don't sit on the sidelines folks, get involved. If you have been looking for something to jump into, this is the one.
We need the individuals to get the word to the Support Group Leaders, and the Leaders to get the word to their Members who don't have access to the internet. This will even give you a reason to hold a special meeting for your group as it will make a fantastic group project!
WHAT DO WE SEND IN TO GET ON THE QUILT?
HOW CAN YOU GET INVOLVED AND HAVE AN INCREDIBLY FUN TIME?
DO I HAVE YOUR INTEREST PIQUED?
GREAT!
Just click on the link below and it will take you to the new webpage we have set up for the "FACES OF RSD QUILT"
http://www.rsdhope.org/ShowPage.asp?page_id=120
Or you can send people to the main page www.RSDHope.org and it is right at the top of the page!
Please share this email and link with all of your members, RSD Friends, RSD Chat Rooms, RSD Bulletin Boards, and RSD Listservs. We have thousands of RSD patients represented in these alone so getting 1,000 squares isn't going to take very long if we all participate so don't hesistate getting your group involved or getting your square mailed in!
If you have a support group party take pictures and send them in!
Thanks for listening and for helping us out everyone!
on behalf of Janice Novak,
Peace and freedom from pain,
Everyone from American RSDHope
www.RSDHope.org
First Previous 2 of 2 Next Last Delete Replies
Reply
Recommend Delete Message 2 of 2 in Discussion
From: byrd45 Sent: 5/26/2005 11:05 AM
I think some of you have heard snippets here and there about a Quilt project, we have been finalizing some details and are ready to officially announce the project is now open and ready to roll! We have a special page set up on the website, the link is below, but here are some of the basics. The Quilt Project is the brainchild of Janice Novak and she has generously asked American RSDHope to spearhead this project. But it will take the cooperation of every group, every RSD patient out there to make it happen because when Janice makes a quilt, JANICE MAKES A QUILT! OUR GOAL IS 1,000 SQUARES! Each 1 foot x 1 foot. That's a lot of squares and a lot of RSD patients. WE WANT TO LITERALLY COVER A FOOTBALL FIELD WITH THE FINISHED QUILT! You can read Janice's whole story on the webpage but here is her inspiration for the quilt. ---------------------------------------------------- "I finally accepted the fact that yes I have RSD and started trying to learn all that I could about this horrific disease and I am still learning. This past winter I sat in my home severely depressed and would get up in the mornings and keep all the curtains shut drawn and would just sit in the dark. I did this all winter long. It wasn't until about a month ago that I decided that I wasn't going to let the RSD take control of my life, I was going to take control of it! I sat here and thought, "What can I do to help others in the same situation?". That is when I came up with the idea of the quilt. I thought well, it would give all of us that are at home something to do and something to look forward to. I also thought about all the emails that I have received about getting this disease out in the public. I feel that it really is a necessity to do that as we all know that aggressive treatment is the only thing that will help. So making the quilt as big as I want I felt would get us the media attention that we need. It would also give me the drive to open the curtains, to have a goal to reach and to make me feel like I am still able to help others. Although not in the way I have had for 23 years but in other ways. I have made a promise to myself and now to other RSD'ers that I WILL IF IT IS THE LAST THING I DO MAKE THIS DISEASE KNOWN! I don't care how much pain this will cause me, if succeed and meet my goal it will be all worth it. I searched for groups on the internet so that I could speak with others about this disease and I found our group, (RSDHope) This group has been a life saver and the members in it and they have given me the drive to do something that I pray will help us all. I don't sleep much due to the pain and twitching and sweating so have plenty of time on my hands to take care of this project." (Gee, an RSD patient who can't sleep, go figure. hee hee.) This disease will be well known and not only our members but all RSD patients across the country will get the recognition they deserve for the fight they have to do on a daily basis. Also I promise I am letting all the people I worked with as a paramedic know that there are people out there with this disease and how to handle these people. It makes me cringe at the thought that I could have been hurting people when I thought I was helping them due to the fact that I didn't know about this disease. This is what we have to change about this disease, ignorance. So, won't you help me fulfill my dream? Janice Novak --------------------------------------------------------------- WHO IS THE QUILT DEDICATED TO ? This Quilt is dedicated to ALL patients and loved ones everywhere, not just RSDHope's, or RSDSA's, or For Grace's, or Martyn's, or ANY individual Organization or group, but to every patient and every loved one who has ever worked to spread awareness of RSD, or to raise research money, the Doctors and Nurses, the support group leaders; all the fighters out there; this is for everyone who ever raised a hand against the monster called RSD, and most of all this is dedicated to all of those we have lost along the way who fought until they could fight no more. That is why this Quilt is so big, it represents so many people and so much work over many, many years. WHO CAN BE INVOLVED IN GETTING THE WORD OUT ? Well, I think if you just look at all of the above that is who IS going to be involved as always! We have an extremely active Community this year. I don't mean just our organization, I mean the RSD Community. So many things are happening around the country this year. Don't sit on the sidelines folks, get involved. If you have been looking for something to jump into, this is the one. We need the individuals to get the word to the Support Group Leaders, and the Leaders to get the word to their Members who don't have access to the internet. This will even give you a reason to hold a special meeting for your group as it will make a fantastic group project! We even have a special section of the Quilt page set up for Group ideas! WHAT DO WE SEND IN TO GET ON THE QUILT? HOW CAN YOU GET INVOLVED AND HAVE AN INCREDIBLY FUN TIME? DO I HAVE YOUR INTEREST PIQUED? GREAT! Just click on the link below and it will take you to the new webpage we have set up for the "FACES OF RSD QUILT" http://www.rsdhope.org/ShowPage.asp?page_id=120 Or you can send people to the main page www.RSDHope.org and it is right at the top of the page! Please share this email and link with all of your members, RSD Friends, RSD Chat Rooms, RSD Bulletin Boards, and RSD Listservs. We have thousands of RSD patients represented in these alone so getting 1,000 squares isn't going to take very long if we all participate so don't hesistate getting your group involved or getting your square mailed in! If you have a support group party take pictures and send them in! Thanks for listening and for helping us out everyone! on behalf of Janice Novak, Peace and freedom from pain, Keith Everyone from American RSDHope www.RSDHope.org --------------------------------------------------------------- T
Choose another message board
Prev Discussion Next Discussion Delete
Reply
Recommend Delete Message 1 of 2 in Discussion
From: byrd45 (Original Message) Sent: 5/26/2005 11:02 AM
GOOD MONDAY ALL!
Keith here from American RSDHope with some exciting updates!
This update is pretty much a newsletter there is so much packed into it. You will definitely want to share this with your groups and their members so feel free to print it out. I will send the second part out tomorrow, Tuesday, and that is the one with most of the updates.
I hope you had a great weekend.
Because there is so much to share I have broken this update into two parts. This first part is solely dedicated to one project, a very special project that we feel could really put RSD Awareness on TV and get some strong Publicity, give us a chance to tell our story, and in a positive light that so many television shows seem to be searching for.
THE "FACES OF RSD QUILT" "THINKING BACK AND LOOKING FORWARD"
I think some of you have heard snippets here and there about a Quilt project, we have been finalizing some details and are ready to officially announce the project is now open and ready to roll!
We have a special page set up on the website, the link is below, but here are some of the basics.
The Quilt Project is the brainchild of Janice Novak and she has generously asked American RSDHope to spearhead this project. But it will take the cooperation of every group, every RSD patient out there to make it happen because when Janice makes a quilt, JANICE MAKES A QUILT!
OUR GOAL IS 1,000 SQUARES!
Each 1 foot x 1 foot. That's a lot of squares and a lot of RSD patients.
WE WANT TO LITERALLY COVER A FOOTBALL FIELD WITH THE FINISHED QUILT!
You can read Janice's whole story on the webpage but here is her inspiration for the quilt.
----------------------------------------------------
"I finally accepted the fact that yes I have RSD and started trying to learn all that I could about this horrific disease and I am still learning. This past winter I sat in my home severely depressed and would get up in the mornings and keep all the curtains shut drawn and would just sit in the dark. I did this all winter long.
It wasn't until about a month ago that I decided that I wasn't going to let the RSD take control of my life, I was going to take control of it!
I sat here and thought, "What can I do to help others in the same situation?". That is when I came up with the idea of the quilt. I thought well, it would give all of us that are at home something to do and something to look forward to. I also thought about all the emails that I have received about getting this disease out in the public. I feel that it really is a necessity to do that as we all know that aggressive treatment is the only thing that will help.
So making the quilt as big as I want I felt would get us the media attention that we need. It would also give me the drive to open the curtains, to have a goal to reach and to make me feel like I am still able to help others. Although not in the way I have had for 23 years but in other ways.
I have made a promise to myself and now to other RSD'ers that I WILL IF IT IS THE LAST THING I DO MAKE THIS DISEASE KNOWN! I don't care how much pain this will cause me, if succeed and meet my goal it will be all worth it.
I searched for groups on the internet so that I could speak with others about this disease and I found our group, (RSDHope)
This group has been a life saver and the members in it and they have given me the drive to do something that I pray will help us all. I don't sleep much due to the pain and twitching and sweating so have plenty of time on my hands to take care of this project."
(Gee, an RSD patient who can't sleep, go figure. hee hee.)
This disease will be well known and not only our members but all RSD patients across the country will get the recognition they deserve for the fight they have to do on a daily basis.
Also I promise I am letting all the people I worked with as a paramedic know that there are people out there with this disease and how to handle these people. It makes me cringe at the thought that I could have been hurting people when I thought I was helping them due to the fact that I didn't know about this disease. This is what we have to change about this disease, ignorance. So, won't you help me fulfill my dream?
Janice Novak
---------------------------------------------------------------
WHO IS THE QUILT DEDICATED TO ?
This Quilt is dedicated to ALL patients and loved ones everywhere, not just RSDHope's, or RSDSA's, or For Grace's, or Martyn's, or ANY individual Organization or group, but to every patient and every loved one who has ever worked to spread awareness of RSD, or to raise research money, the Doctors and Nurses, the support group leaders; all the fighters out there; this is for everyone who ever raised a hand against the monster called RSD, and most of all this is dedicated to all of those we have lost along the way who fought until they could fight no more.
That is why this Quilt is so big, it represents so many people and so much work over many, many years.
WHO CAN BE INVOLVED IN GETTING THE WORD OUT ?
Well, I think if you just look at all of the above that is who IS going to be involved as always! We have an extremely active Community this year. I don't mean just our organization, I mean the RSD Community. So many things are happening around the country this year.
Don't sit on the sidelines folks, get involved. If you have been looking for something to jump into, this is the one.
We need the individuals to get the word to the Support Group Leaders, and the Leaders to get the word to their Members who don't have access to the internet. This will even give you a reason to hold a special meeting for your group as it will make a fantastic group project!
WHAT DO WE SEND IN TO GET ON THE QUILT?
HOW CAN YOU GET INVOLVED AND HAVE AN INCREDIBLY FUN TIME?
DO I HAVE YOUR INTEREST PIQUED?
GREAT!
Just click on the link below and it will take you to the new webpage we have set up for the "FACES OF RSD QUILT"
http://www.rsdhope.org/ShowPage.asp?page_id=120
Or you can send people to the main page www.RSDHope.org and it is right at the top of the page!
Please share this email and link with all of your members, RSD Friends, RSD Chat Rooms, RSD Bulletin Boards, and RSD Listservs. We have thousands of RSD patients represented in these alone so getting 1,000 squares isn't going to take very long if we all participate so don't hesistate getting your group involved or getting your square mailed in!
If you have a support group party take pictures and send them in!
Thanks for listening and for helping us out everyone!
on behalf of Janice Novak,
Peace and freedom from pain,
Everyone from American RSDHope
www.RSDHope.org
First Previous 2 of 2 Next Last Delete Replies
Reply
Recommend Delete Message 2 of 2 in Discussion
From: byrd45 Sent: 5/26/2005 11:05 AM
I think some of you have heard snippets here and there about a Quilt project, we have been finalizing some details and are ready to officially announce the project is now open and ready to roll! We have a special page set up on the website, the link is below, but here are some of the basics. The Quilt Project is the brainchild of Janice Novak and she has generously asked American RSDHope to spearhead this project. But it will take the cooperation of every group, every RSD patient out there to make it happen because when Janice makes a quilt, JANICE MAKES A QUILT! OUR GOAL IS 1,000 SQUARES! Each 1 foot x 1 foot. That's a lot of squares and a lot of RSD patients. WE WANT TO LITERALLY COVER A FOOTBALL FIELD WITH THE FINISHED QUILT! You can read Janice's whole story on the webpage but here is her inspiration for the quilt. ---------------------------------------------------- "I finally accepted the fact that yes I have RSD and started trying to learn all that I could about this horrific disease and I am still learning. This past winter I sat in my home severely depressed and would get up in the mornings and keep all the curtains shut drawn and would just sit in the dark. I did this all winter long. It wasn't until about a month ago that I decided that I wasn't going to let the RSD take control of my life, I was going to take control of it! I sat here and thought, "What can I do to help others in the same situation?". That is when I came up with the idea of the quilt. I thought well, it would give all of us that are at home something to do and something to look forward to. I also thought about all the emails that I have received about getting this disease out in the public. I feel that it really is a necessity to do that as we all know that aggressive treatment is the only thing that will help. So making the quilt as big as I want I felt would get us the media attention that we need. It would also give me the drive to open the curtains, to have a goal to reach and to make me feel like I am still able to help others. Although not in the way I have had for 23 years but in other ways. I have made a promise to myself and now to other RSD'ers that I WILL IF IT IS THE LAST THING I DO MAKE THIS DISEASE KNOWN! I don't care how much pain this will cause me, if succeed and meet my goal it will be all worth it. I searched for groups on the internet so that I could speak with others about this disease and I found our group, (RSDHope) This group has been a life saver and the members in it and they have given me the drive to do something that I pray will help us all. I don't sleep much due to the pain and twitching and sweating so have plenty of time on my hands to take care of this project." (Gee, an RSD patient who can't sleep, go figure. hee hee.) This disease will be well known and not only our members but all RSD patients across the country will get the recognition they deserve for the fight they have to do on a daily basis. Also I promise I am letting all the people I worked with as a paramedic know that there are people out there with this disease and how to handle these people. It makes me cringe at the thought that I could have been hurting people when I thought I was helping them due to the fact that I didn't know about this disease. This is what we have to change about this disease, ignorance. So, won't you help me fulfill my dream? Janice Novak --------------------------------------------------------------- WHO IS THE QUILT DEDICATED TO ? This Quilt is dedicated to ALL patients and loved ones everywhere, not just RSDHope's, or RSDSA's, or For Grace's, or Martyn's, or ANY individual Organization or group, but to every patient and every loved one who has ever worked to spread awareness of RSD, or to raise research money, the Doctors and Nurses, the support group leaders; all the fighters out there; this is for everyone who ever raised a hand against the monster called RSD, and most of all this is dedicated to all of those we have lost along the way who fought until they could fight no more. That is why this Quilt is so big, it represents so many people and so much work over many, many years. WHO CAN BE INVOLVED IN GETTING THE WORD OUT ? Well, I think if you just look at all of the above that is who IS going to be involved as always! We have an extremely active Community this year. I don't mean just our organization, I mean the RSD Community. So many things are happening around the country this year. Don't sit on the sidelines folks, get involved. If you have been looking for something to jump into, this is the one. We need the individuals to get the word to the Support Group Leaders, and the Leaders to get the word to their Members who don't have access to the internet. This will even give you a reason to hold a special meeting for your group as it will make a fantastic group project! We even have a special section of the Quilt page set up for Group ideas! WHAT DO WE SEND IN TO GET ON THE QUILT? HOW CAN YOU GET INVOLVED AND HAVE AN INCREDIBLY FUN TIME? DO I HAVE YOUR INTEREST PIQUED? GREAT! Just click on the link below and it will take you to the new webpage we have set up for the "FACES OF RSD QUILT" http://www.rsdhope.org/ShowPage.asp?page_id=120 Or you can send people to the main page www.RSDHope.org and it is right at the top of the page! Please share this email and link with all of your members, RSD Friends, RSD Chat Rooms, RSD Bulletin Boards, and RSD Listservs. We have thousands of RSD patients represented in these alone so getting 1,000 squares isn't going to take very long if we all participate so don't hesistate getting your group involved or getting your square mailed in! If you have a support group party take pictures and send them in! Thanks for listening and for helping us out everyone! on behalf of Janice Novak, Peace and freedom from pain, Keith Everyone from American RSDHope www.RSDHope.org --------------------------------------------------------------- T
byrd45- Admin
- Posts : 1014
Points : 343
Reputation : 0
Join date : 2008-10-29
Age : 60
Location : PA -
Page 1 of 1
Permissions in this forum:
You cannot reply to topics in this forum|
|
|