Re: So what now?

August 10, 2006

Hello-

Well for me... I was part of this in San Diego for several years. I was

Arthritis Walk honoree and some other related programs like Joints In

Motion.

I now refer to this as Poster Child syndrome... lol.... I have to admit that

b/c of my place now as a disability advovate, im not a fan of this method...

it's so hard to know what I feel because there are many pros and cons. Maybe

I should not be so blunt or cynical? It is good because it helps raise

awareness... might increase your childs positive feelings about herself with

this disease.. not saying she doesnt have positive feelings about it. I

enjoyed the time I spent in these ... places.. honors? But on the other

side... I was basicaly a pawn to raise money. Some will say, well we need

money.. research... awareness.. scholarships.. which is true... but..

anyways, I won't go on my rant.... When I was younger, it helped me... when

I was older.. well.. I took a different perspective due to things I observed

in the operation of .. different things. Okay.. abstract.. if you really

want to know more.. let me know. On the other hand, it can be very

positive...

In terms of involvement.. I don't know what involvement your chapter will

have but here.. mostly, it was doing fun things like.... getting your

picture taken... maybe some interviews about how inspirational she is....

and sometimes they have those forming teams, etc meet at a nice luncheon or

other celebration for honorees where they will meet the child and it gives

others motivaton for raising money.. a face to the cause, etc..

Ussualy, you are not expected to be fundrasing although you can. Mostly it

will be celebration and fun that shows those raising money a child with

arthritis.... the reason WHY they should raise all the money they can etc..

Anyways, hope this helps... despite my own obviuous reservations.. it was

fun to me before I became an adult with other thoughts in my head... lol.

Issadora

On 8/10/06, son <newmom2003@...> wrote:

>

> Good evening,

>

> I got this e-mail from the arthritis foundation here in Utah this

> afternoon.

>

> I wanted to talk with you about naming Audrey as our honoree for our

> annual Arthritis Walk this year. It will be held on Saturday, October 7, at

> Wheeler Farm, in the morning. Do you think that would be a possibility? Is

> there a time I can call you to discuss this a bit more? Or if you'd prefer,

> I can email more info if you think you and Audrey would be interested. I

> hope you'll consider it - Audrey's little grinning face in the photo you

> sent is so adorable! I think she would be fabulous as an honoree, and you

> two can decide how much or how little you'd like to be involved.

>

> Of course I told her yes, but I realize now that I probably should have

> asked what it would involve first. I know many of you have had this

> experience - can you tell me what to expect? Do I have to be super

> fundraiser or something?

>

August 11, 2006

- Hunter (age 7) was our Honoree last year. She hated doing the

commercials - she hated talking about herself so much, she complained about all

the meetings we had to go to - but in the end - when it came time to Walk - she

was so proud to be the leader and take that first step. We were very proud

of her - this year she was sad that she would not be the honoree - but she is

really out there fundraising for the Walk. It can be tiring but it is worth

it. Good Luck and thank you for taking a stand against arthritis. Sandi Ken

Hunter (7 Systemic)

August 11, 2006

Issadora... I know just what you mean. When I started volunteering with the

AF my name and pic was everywhere and I always felt they used me because for

my age my arthritis was so obvious to the eye and I could draw the pity, pull

at the heartstrings, etc. It made me sick to feel used, to feel I was the

poster child, person for the AF. I actually was told by our former Chapter Pres

to " make them cry, Donna " . For those who know me, I am not a crier and I

sure do not want to make anyone cry, even for a purpose such as raising money.

SO...I started telling my story with my positive attitude, for every negative I

had a positive tale to tell. I spoke of overcoming, fighting back and living

with a smile despite the negative impact of JRA.....I got less and less

invites to speak and as some of you know I eventually left the AF and served as

primary coordinator of FACES. There were more reasons for this but will not go

into details. Over two years later I touched base with the local AF and

discovered the office had a new manager and the chapter had been taken over by

ORV chapter an now the KY chapter was a branch of the ORV chapter. With all

new people, a new focus and new mission I felt the desire and need to return

to the AF and now serve as Volunteer Chair of The AJAO-KY. I now share my

story as I wish and the benefits to the AF and myself are positive. If some shed

a tear that's ok. My personal mission is to do what I have to do to raise

awareness to the kids, Juvenile Arthritis, the seriousness of the disease, and

how someday we can have a cure!

As for what it means...it means educating the public, raising the much

needed awareness, hopefully raising funds that will go to research to help

everyone suffering and maybe banish the disease someday. One voice heard by

hundreds

makes a difference so what does hundred of voices being heard do????? I

encourage everyone to speak up , whether is as an honoree, advocate, or simply

sticking a sticker on your powerchair or telling the lady in the grocery store

what is wrong with you or your child..

Off the soapbox now.....

Hang tight , Hang tough

Donna

August 11, 2006

,

Go for it! I think it'll be fun for Audrey to be the star. :-) Generally

you're just asked to be present at the Walk and at any kick-off or wrap up

functions (which not all chapters even have). As far as fund raising goes,

just do what you normally do.

Issadora is correct~~ this is a way to increase fundraising in your area.

But it is also a way to raise awareness that this disease hits children as

well as adults, which is a message that really needs to be out there. The AF

has made Juvenile Arthritis a top priority, so if we~~ and our kids~~ can

help raise funds, great. Being a priority won't mean much if these's not

enough money to meet all the goals. My daughter was the 2005 National Walk

Honoree. She was 13 when those walks took place, old enough to understand

all of this. She has no negative feelings at all about her role and

continues to speak up on behalf of the kids.

Tell Audrey to enjoy being the STAR!!

Liz

_____

From: [mailto: ] On Behalf

Of son

Sent: Thursday, August 10, 2006 11:57 PM

Subject: So what now?

Good evening,

I got this e-mail from the arthritis foundation here in Utah this afternoon.

I wanted to talk with you about naming Audrey as our honoree for our annual

Arthritis Walk this year. It will be held on Saturday, October 7, at Wheeler

Farm, in the morning. Do you think that would be a possibility? Is there a

time I can call you to discuss this a bit more? Or if you'd prefer, I can

email more info if you think you and Audrey would be interested. I hope

you'll consider it - Audrey's little grinning face in the photo you sent is

so adorable! I think she would be fabulous as an honoree, and you two can

decide how much or how little you'd like to be involved.

Of course I told her yes, but I realize now that I probably should have

asked what it would involve first. I know many of you have had this

experience - can you tell me what to expect? Do I have to be super

fundraiser or something?

August 11, 2006

Hey everyone, I'm new to the group. I've had poly-JRA since i was

four. I had the same thing happen to me. I was asked by my chapter

to speak at a breakfast event, and asked to be the " emotional story "

for the program. I was a little nervous about opening up and

telling my story, but after it was over i saw how many people i

actually EDUCATED about Juvenile Arthritis. I now think its awesome

when my chapter asks me to speak about my challenges with arthritis

because it gives me the opportunity to change the perception, and

really let people know that KIDS GET ARTHRITIS TOO! If we, the

people with JA, dont show our faces and share our stories for the

Arthritis Foundation, then who will and how will they ever raise

money for reasearch and to hopefully find a cure? I am always

honored when asked!!

Hope this helps a little.

DanyellaMarie - 27 poly-JRA

>

> Issadora... I know just what you mean. When I started

volunteering with the

> AF my name and pic was everywhere and I always felt they used me

because for

> my age my arthritis was so obvious to the eye and I could draw

the pity, pull

> at the heartstrings, etc. It made me sick to feel used, to feel I

was the

> poster child, person for the AF. I actually was told by our former

Chapter Pres

> to " make them cry, Donna " . For those who know me, I am not a crier

and I

> sure do not want to make anyone cry, even for a purpose such as

raising money.

> SO...I started telling my story with my positive attitude, for

every negative I

> had a positive tale to tell. I spoke of overcoming, fighting back

and living

> with a smile despite the negative impact of JRA.....I got less

and less

> invites to speak and as some of you know I eventually left the AF

and served as

> primary coordinator of FACES. There were more reasons for this

but will not go

> into details. Over two years later I touched base with the local

AF and

> discovered the office had a new manager and the chapter had been

taken over by

> ORV chapter an now the KY chapter was a branch of the ORV

chapter. With all

> new people, a new focus and new mission I felt the desire and need

to return

> to the AF and now serve as Volunteer Chair of The AJAO-KY. I now

share my

> story as I wish and the benefits to the AF and myself are

positive. If some shed

> a tear that's ok. My personal mission is to do what I have to do

to raise

> awareness to the kids, Juvenile Arthritis, the seriousness of the

disease, and

> how someday we can have a cure!

> As for what it means...it means educating the public, raising the

much

> needed awareness, hopefully raising funds that will go to research

to help

> everyone suffering and maybe banish the disease someday. One voice

heard by hundreds

> makes a difference so what does hundred of voices being heard

do????? I

> encourage everyone to speak up , whether is as an honoree,

advocate, or simply

> sticking a sticker on your powerchair or telling the lady in the

grocery store

> what is wrong with you or your child..

> Off the soapbox now.....

>

> Hang tight , Hang tough

> Donna

>

August 11, 2006