Arthritis Walk

[Guest guest]

Hi ,

Good for you doing the walk...... We are doing the walk in Denver! My daughter too is 8 years old. We are bringing the jog stroller for Haley.... I don't think she would be able to walk the entire time.... and I don't want her (or me) to pay for her feet hurting for the next couple of days!!

Do you have a JRA camp near you?? Haley is SO excited about doing the JRA camp! Our's is in Estes Park, Colorado. You might want to check if there is a camp near you for your daughter to attend. The one here they need to be 9 years old. (Haley is 9 in July, that is when the camp is!)

Good Luck with the walk!

Terrie (Haley, poly)

[Guest guest]

In a message dated 4/27/2003 5:41:23 PM Central America Standard Tim, myatt4@... writes:

doesn't turn 9 until Nov. But, thats not going to stop us!

Double check what their age requirement is....... Our's is age 9..... That doesn't mean yours is! That would be SO much fun for her to go to camp with kids with the same issues she has!!

I am wondering one thing though. Does your daughter get sick alot? seems to be sick all the time and she misses alot of school.

When Haley was first diagnosed she missed her whole kindergarten year.... I kept her in preschool an extra year because she rarely felt well enough to attend. Then she went into remission. Since January of this year she has missed a lot of school again. Her joints were very swollen and her feet hurt a lot. We started occupational therapy and the days she had that it was a crap shoot if she could make it to school. It really kicked her butt! Then we went from Methotrexate pills to Methotrexate injections then she really felt badly. It appeared that she just generally didn't feel well and was VERY cranky and moody! Her neck, back and hips hurt where she couldn't turn her head up and down or left to right to be able to do school work. Now, we started Arava...... results to follow!! LOL!! She is overjoyed that she doesn't need weekly shots from me though!!

What medications do you have on right now... are her joints really swollen?? Is the school working on making her day a bit easier??

, if you would like I can give you my phone number and we can really talk!!

It's a tough road..... I think the toughest thing is that no matter how hard I try, or how diligent I am, I really can't "fix" this! My fears are many! I feel badly that Haley can't play sports, dance at a dance class. Our summers are spent at Lake McConaughy, and she can't waterski.... like the rest of our kids.... or her younger brother! This is the part that is really tough! My fears of if she doesn't "outgrow" this.... could she end up in a wheelchair....? She is my only daughter!! (I do have 4 boys......not quite the same as my daughter!!..............LOL)

Terrie (Haley, polyarticular)

[Guest guest]

Hi ,

Thank you for stepping right up there and taking such an active role in our fight for arthritis.We will be walking the 5k with our 4 yr old which I think is just under 3 miles.Last May he couldn't hardly walk at all.Welcome to the JRA list.

Hugs

Becki and 4systemic

[Guest guest]

Wow, ...I thought we were doing well with our fundraising...you

are doing AWESOME!!! GO KNOBLE WALKERS!!!!

We'll be with you in spirit on May 1. Our walk isn't until 5/22.

and Rob 14 Spondy

On Thu, 04 Mar 2004 02:56:17 -0000 " katherine_knoble "

<knoblefamily@...> writes:

> Like many others here, the Walk is providing a positive avenue to

> contribute to the enhancement of better treatment and hopefully a

> cure. Thanks Liz and Steve for getting us involved.

>

> www.knoblewalkers.chariteam.com

>

> Good Luck to all! Together we will make a difference.

>

> (Christian,12 systemic)

>

>

>

>

[Guest guest]

Thanks . It's been uplifting so have friends and family who have

so willingly contributed to our Walk. It's encouraging. You are

doing great with your donations! We'll be thinking of you and

wishing you the very best for a sucessful Walk, you're well on your

way. Congrats.

> Wow, ...I thought we were doing well with our

fundraising...you

> are doing AWESOME!!! GO KNOBLE WALKERS!!!!

> We'll be with you in spirit on May 1. Our walk isn't until 5/22.

> and Rob 14 Spondy

>

> On Thu, 04 Mar 2004 02:56:17 -0000 " katherine_knoble "

> <knoblefamily@c...> writes:

> > Like many others here, the Walk is providing a positive avenue to

> > contribute to the enhancement of better treatment and hopefully a

> > cure. Thanks Liz and Steve for getting us involved.

> >

> > www.knoblewalkers.chariteam.com

> >

> > Good Luck to all! Together we will make a difference.

> >

> > (Christian,12 systemic)

> >

> >

> >

> >

[Guest guest]

:Glad to see that your fundraising is off to a running start!It is so great to help others find their way, being able to point them in the right direction, etc. Thanks for being an advocate!! and Rob 15 Spondy

On Mon, 26 Apr 2004 14:30:17 -0500 "Tepper, Michele" <MTepper@...> writes:

I just wanted to share something. and I decided to walk this Saturday in Chicago's Arthritis Walk. I did send out some emails from my site and Chris' and got some donations that way. I decided to post the info here at work today. Just put a letter up about how I was walking and if anyone wanted to donate or more info let me know. I did not feel comfortable going directly to people and asking for donations. Amazingly, quite a few people have been asking me about JRA and what is done for it. I got some donations already! I feel like I'm some kind of advocate here! LOL Just wanted to let you all know, I'm doing my part I guess to get the word out about arthritis. One of the ladies said a friend was just diagnosed and I directed her to the Arthritis Foundation website as a good place to start. And to think I felt funny to put up the info. Michele ( pauci & spondy)

[Guest guest]

Thanks, . I guess what got me was, I was so reluctant to put the sign up, and here I am actually helping steer someone in the right direction and I'm educating others about what I know unfortunately too well. I never thought that I would be able to do that. I never saw myself like that I guess. Michele

-----Original Message-----From: snooksmama@... [mailto:snooksmama@...] Sent: Monday, April 26, 2004 3:06 PM Subject: Re: Arthritis Walk

:Glad to see that your fundraising is off to a running start!It is so great to help others find their way, being able to point them in the right direction, etc. Thanks for being an advocate!! and Rob 15 Spondy

On Mon, 26 Apr 2004 14:30:17 -0500 "Tepper, Michele" <MTepper@...> writes:

I just wanted to share something. and I decided to walk this Saturday in Chicago's Arthritis Walk. I did send out some emails from my site and Chris' and got some donations that way. I decided to post the info here at work today. Just put a letter up about how I was walking and if anyone wanted to donate or more info let me know. I did not feel comfortable going directly to people and asking for donations. Amazingly, quite a few people have been asking me about JRA and what is done for it. I got some donations already! I feel like I'm some kind of advocate here! LOL Just wanted to let you all know, I'm doing my part I guess to get the word out about arthritis. One of the ladies said a friend was just diagnosed and I directed her to the Arthritis Foundation website as a good place to start. And to think I felt funny to put up the info. Michele ( pauci & spondy)

[Guest guest]

Conogratulations ! That is awesome.... It only takes one to educate many.. good for you!

Alia and Caroline, age 2, poly and uveitis

-----Original Message-----From: Tepper, Michele [mailto:MTepper@...]Sent: Monday, April 26, 2004 2:30 PM Subject: Arthritis Walk

I just wanted to share something. and I decided to walk this Saturday in Chicago's Arthritis Walk. I did send out some emails from my site and Chris' and got some donations that way. I decided to post the info here at work today. Just put a letter up about how I was walking and if anyone wanted to donate or more info let me know. I did not feel comfortable going directly to people and asking for donations. Amazingly, quite a few people have been asking me about JRA and what is done for it. I got some donations already! I feel like I'm some kind of advocate here! LOL Just wanted to let you all know, I'm doing my part I guess to get the word out about arthritis. One of the ladies said a friend was just diagnosed and I directed her to the Arthritis Foundation website as a good place to start. And to think I felt funny to put up the info. Michele ( pauci & spondy)

[Guest guest]

-Good for you Michele...i'm proud of you!!!

good luck on the walk... Have fun!!!

Hugs Helen and (6,systemic)

-- In , " Tepper, Michele " <MTepper@f...>

wrote:

> I just wanted to share something. and I decided to walk this

> Saturday in Chicago's Arthritis Walk. I did send out some emails

from my

> site and Chris' and got some donations that way. I decided to post

the

> info here at work today. Just put a letter up about how I was

walking

> and if anyone wanted to donate or more info let me know. I did not

feel

> comfortable going directly to people and asking for donations.

> Amazingly, quite a few people have been asking me about JRA and

what is

> done for it. I got some donations already! I feel like I'm some

kind of

> advocate here! LOL Just wanted to let you all know, I'm doing my

part I

> guess to get the word out about arthritis. One of the ladies said a

> friend was just diagnosed and I directed her to the Arthritis

Foundation

> website as a good place to start. And to think I felt funny to put

up

> the info. Michele ( pauci & spondy)

[Guest guest]

,

I just had our arthritis walk here in Jax., FL. this Saturday. Wish

I would have thought of it. Good luck on the walk.

Keli

> Hey all, on May 22 the arthritis foundation is sponsoring a

national walk to

> raise money for arthritis. I will be walking in my home state of

ohio, and

> my goal is 100.00 to be raised. My personal website is

> http://celticangyl.chariteam.com if you can give, even if it's

only a

> dollar, it's appreciated and we know it will go to a good

cause.....Sorry if

> this kind of announcement isn't allowed... I thought it was

important.

>

>

[Guest guest]

--

I would be happy to send you $10 for such a worthy cause but I do not want

to do it with my credit card on the site. If you will email me at

cdyost@... with your address I will send a check to you. I know

I am old fashioned. Good Luck with the walk.

Cheri

Ed. Note: This IS a worthy cause, however, this is not the right forum to ask

people for donations. Nonetheless, we all are all proud of for doing

this. Kathy F.

[ ] Arthritis walk

> Hey all, on May 22 the arthritis foundation is sponsoring a national walk

to

> raise money for arthritis. I will be walking in my home state of ohio,

and

> my goal is 100.00 to be raised. My personal website is

> http://celticangyl.chariteam.com if you can give, even if it's only a

> dollar, it's appreciated and we know it will go to a good cause.....Sorry

if

> this kind of announcement isn't allowed... I thought it was important.

>

>

>

>

[Guest guest]

So if it is not the correct forum for such a request how did it get posted?

I assumed it was approved because it was posted. Just curious. Cheri

Ed. Note: I let the message go through because it brought attention to the

Arthritis Walks which raise funds for such a worthy cause and we are all here

because of arthritis. However, we should not use this list to solicit

donations, even for the worthiest of causes. I am really sorry, Cheri, if I

confused you. I probably exercised bad judgment by letting the original post go

through. Kathy F.

Re: [ ] Arthritis walk

> --

>

> I would be happy to send you $10 for such a worthy cause but I do not want

> to do it with my credit card on the site. If you will email me at

> cdyost@... with your address I will send a check to you. I

know

> I am old fashioned. Good Luck with the walk.

>

> Cheri

>

> Ed. Note: This IS a worthy cause, however, this is not the right forum to

ask people for donations. Nonetheless, we all are all proud of for

doing this. Kathy F.

[Guest guest]

That's ok, I will seriously think before posting to the list again, there are

just way too many rules and agendas. We are an ARTHRITIS list, and I wasn't

solely solicity money, geesh, I was trying to create awareness, my bad. This is

the first I've even seen the responses to my orig. post.

Cheri, thank you very much and I'll email you offline.

Mel

(Ed. Note: , I sincerely apologize for the ill will I appear to have

created. I know that you were trying to raise awareness which is precisely why

I let the first post go through - in fact ALL posts on this topic have been

allowed to go through. It is clearly for a wonderful cause and you are terrific

for being involved in it. However, there are many worthy causes to donate to

including Alzheimers, Breast Cancer, the American Heart Association, etc., but

this is not the right vehicle for doing it. Please chalk this all up to my

inexperience as an editor. I wish that you would reconsider your decision not

to post again as we all value your contributions to the list and it would be a

shame for the list to miss out on your insights solely because of MY

inexperience. Kathy F.)

Re: [ ] Arthritis walk

So if it is not the correct forum for such a request how did it get posted?

I assumed it was approved because it was posted. Just curious. Cheri

Ed. Note: I let the message go through because it brought attention to the

Arthritis Walks which raise funds for such a worthy cause and we are all here

because of arthritis. However, we should not use this list to solicit

donations, even for the worthiest of causes. I am really sorry, Cheri, if I

confused you. I probably exercised bad judgment by letting the original post go

through. Kathy F.

[Guest guest]

I stumbled upon it looking for a place to have my child's birthday... and

boom, there was the ad, I went investigating and before I knew it, was

signing up... I'm excited about it...

Mel

[ ] Re: Arthritis walk

> ,

> I just had our arthritis walk here in Jax., FL. this Saturday. Wish

> I would have thought of it. Good luck on the walk.

>

> Keli

>

[Guest guest]

I have very good friends that live in piqua =) And good luck to you too!!

[ ] arthritis walk

> melissa, i am doing the walk in piqua, OH on may23. or i hope to.

> since being off enbrel, i am not sure i can, but i really want

> to try. it's not often we get these things so close, they are

> usally in dayton area.

>

> good luck with yours, i will be thinking about you on sunday.

> susan in fletcher oh

[Guest guest]

Hmmm, I could not tell you when it was announced but it was somewhere

betwen when the one milers came in and the three milers finished.LOL. There was

a lot of folks in though because the applause was thunderous. This was a

really good turnout. When we did the Joint Walk several years back there may

have

been 50 folks...heck FACES had that many there...lol. It was a good turnout

and next year will be even better......Thanks again!

Donna

[Guest guest]

Thanks Donna! You guys are too awesome for words!

When did they announce the amount raised? I was one of the last groups to

finish walking, I must have missed that. That makes me feel better that

they did announce it. And for the turnout, I think that $21,000 is

absolutely incredible! WOW!!!!

and Rob 15 Spondy

On Sat, 22 May 2004 20:27:18 EDT faces1999@... writes:

Go FACES! Once again I come to share with the group how proud I am of

FACES.

Today was the arthritis walk in Louisville and FACES from FACES were

plentiful. It was an emotional time. I am extremely proud of our

speakers, including

! She did a great job and Robs Raiders rock! This was the first walk

for

this area and over $21,000.00 was made. I was really happy with the

announcement. When it was announced those in the area let out whistles of

excitement. It

was alot of work and dedication and to all who are doing these walks I

send a

huge thank you! hugs and smiles!

Donna

[Guest guest]

Yes Maira, you were truly awsome! You speech was truly awsome!

HPLTA

Rusty

[Guest guest]

Thanks Stacia!!!!!

Donna

[Guest guest]

Isn't that a wonderful feeling to know that you are doing something

to help others? Way to go FACES and all the Louisville walkers.

Stacia

[Guest guest]

Stacia:

YES IT IS!!

I hope that all our efforts make a difference, one step, one day at a

time...

and Rob 15 Spondy

On Sun, 23 May 2004 22:35:42 -0000 " staciar101 " <staciar@...>

writes:

Isn't that a wonderful feeling to know that you are doing something

to help others? Way to go FACES and all the Louisville walkers.

Stacia

[Guest guest]

Stacia,

Right now our committe has locked in the date and time for next years walk.We

are getting corporate sponsers since their budgets are being made now.Getting

a volunteer for all the official chairs.Setting up the corporate kick off

breakfast.Our head chairs wife writes grants so she is working on getting us

some

money,lol she is used to $100,000 grants minimum.Working on getting some

Tennessee Titan football players involved.We have ordered the new blue arthritis

braclets that sell for $1 a piece.About the only things we aren't doing is

selling stars yet,distributing walk posters and actualy recruiting teams and

walkers.

Hugs

Becki and 6 systemic

[Guest guest]

Becki,

I am so glad to see that someone has picked up on the bracelet kick. If

nothing else it will raise awareness. Are the bracelets only sold in

the Tennessee area, or is this a national thing? I would love to get my

hands on some of them, and put them in my Xmas cards. Just one more way

of spreading the awareness. Let me know. I know that we have a local

chapter meeting on Saturday and I would love to be able to talk about

that.

Let me know.

and Allie (8 poly)

________________________________

From: Arthurnator@... [mailto:Arthurnator@...]

Sent: Thursday, November 11, 2004 8:48 AM

Subject: Re: Arthritis Walk

Stacia,

Right now our committe has locked in the date and time for next years

walk.We

are getting corporate sponsers since their budgets are being made

now.Getting

a volunteer for all the official chairs.Setting up the corporate kick

off

breakfast.Our head chairs wife writes grants so she is working on

getting us some

money,lol she is used to $100,000 grants minimum.Working on getting some

Tennessee Titan football players involved.We have ordered the new blue

arthritis

braclets that sell for $1 a piece.About the only things we aren't doing

is

selling stars yet,distributing walk posters and actualy recruiting teams

and

walkers.

Hugs

Becki and 6 systemic

[Guest guest]

Hey Stacia -

Right now we are working on getting corporate sponsorships and finishing up

the committee. We finally have a chair, but I think there are still a few

other vacancies. We have another meeting next week so I can give you an

update then.

Alia

Arthritis Walk

Alia, Becki and other involved with your arthritis walks,

What are you actively doing at this stage of the game????

Stacia

[Guest guest]

-...

I wish I could make the meeting on Saturday, but I work nights over

the weekends and sleep during the day. What time is it???? Dr W.

keeps asking me if I ever make it to any of them. I wish I could.

Could you do me a favor, is it that runs the meetings?? I

think this is the name Dr W mentioned. Well, could you ask her if

they would consider having these meetings on differents days once in

awhile so others can attend too??? like on a weekday evening. IM not

saying all the time, but perhaps rotate, one time saturday, next

weeknight etc...

I love the sound of a arthritis bracelet.. is this Arthritis in

general or one for JRA???

Hugs Helen and (7,systemic)

-- In , " Ray " <leslie@b...> wrote:

> Becki,

>

> I am so glad to see that someone has picked up on the bracelet

kick. If

> nothing else it will raise awareness. Are the bracelets only sold

in

> the Tennessee area, or is this a national thing? I would love to

get my

> hands on some of them, and put them in my Xmas cards. Just one

more way

> of spreading the awareness. Let me know. I know that we have a

local

> chapter meeting on Saturday and I would love to be able to talk

about

> that.

>

> Let me know.

> and Allie (8 poly)

>

>

>

>

> ________________________________

>

> From: Arthurnator@w... [mailto:Arthurnator@w...]

> Sent: Thursday, November 11, 2004 8:48 AM

>

> Subject: Re: Arthritis Walk

>

>

> Stacia,

> Right now our committe has locked in the date and time for next

years

> walk.We

> are getting corporate sponsers since their budgets are being made

> now.Getting

> a volunteer for all the official chairs.Setting up the corporate

kick

> off

> breakfast.Our head chairs wife writes grants so she is working on

> getting us some

> money,lol she is used to $100,000 grants minimum.Working on

getting some

>

> Tennessee Titan football players involved.We have ordered the new

blue

> arthritis

> braclets that sell for $1 a piece.About the only things we aren't

doing

> is

> selling stars yet,distributing walk posters and actualy recruiting

teams

> and

> walkers.

> Hugs

> Becki and 6 systemic

>

>

>