RE: advice needed on starting up a JRA network

[Guest guest]

,

If you have any local universities look up the sisters of Alpha Omicron

Pi.They are a huge sponser of the AF and you will find their logo on probably

every

walk t-shirt around the country not to mention the AJAO conferance shirts.

As you get your walk committee going and start your meetings you will want

someone from AOPI to come to relay info back to the sarority.Not only are they

good at fund raising they are the backbone of walk volunteers.

Good luck with your adventure and standing up for the children.

Hugs

Becki and 6 systemic

[Guest guest]

As an adult with JRA for the past 45 years, I can tell you for a fact

you have a difficult job ahead. I would suggest you contact the FACES

group which posts here on occasion. However, if you are expecting any

support from the AF/AJAO, don't hold your breath. IMHO the AF/AJAO

has become worthless.

> Okay gang, I need some help. It all started about a month ago when

I was surfing the web on the Arthritis Foundation's website. I came

across a name of a woman who was put over the state of Oregon. Our

chapter shut down two years ago, and we have been left high and dry.

I emailed this woman from national, Judy McAbee, and one thing led to

another and she flew out here. We had a meeting last night at our

local Children's Hospital with her, the hospital social worker, and

about ten parents. We are trying to put together a task force for

JRA and I am supposed to co-chair it. We are also going to try to

have the Arthritis Walk in May. I know a number of ya'll are active

in doing fundraising and coordinating things thru out the US, and I

could use some help. I am a good follower, but am a bit hesitant

when I have to lead. Any suggestions would be appreciated. Thanks,

(n, 15, systemic)

>

>

[Guest guest]

Hi ,

Great job jumping in head first without knowing where you're

going,lol. Taking that first step is probably the hardest. Since

nothing has been done there in the last two years, the good news is

that there should be no expectations to meet on anyone's part.

Now, what exactly is it that you are trying to accomplish? Starting

a local support group (informal)? Start an AF chapter? It is clear

you want to at least get a Walk going.

It sounds to me like you have 10 parents who care, an AF person who

cares, and a doctor/hospital who cares, just for starters. That's

awesome!!!! Take some credit for that right away. Did you all

brainstorm last night? I'll email you what I have gotten from the

AF about the Walk.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

I am on the Arthritis Walk Committee for a Walk in Lynchburg. This is the

first year I've done this and only the 2nd walk I've attended.so I'm no

expert but thought I'd try.

We have 2 women on our team from a " league " . They are involved in trying to

bring young adults to the area to work. Anyway.they are EXTREMELY helpful

and maybe you can find some people that involved in something like this.

Also one of the women on the committee for the walk works for a local

college. She is the " Assistant Director of the Annual Fund " . She has been

very helpful by knowing who to contact and who would be interested in

helping. Maybe you could check a local colleges website and see if you

could find out who helps with fundraising there.

I sure hope this helps and I wish you the very best of luck..keep us updated

too!

Ashlee (Madison, poly, 2)

advice needed on starting up a JRA network

Okay gang, I need some help. It all started about a month ago when I was

surfing the web on the Arthritis Foundation's website. I came across a name

of a woman who was put over the state of Oregon. Our chapter shut down two

years ago, and we have been left high and dry. I emailed this woman from

national, Judy McAbee, and one thing led to another and she flew out here.

We had a meeting last night at our local Children's Hospital with her, the

hospital social worker, and about ten parents. We are trying to put

together a task force for JRA and I am supposed to co-chair it. We are also

going to try to have the Arthritis Walk in May. I know a number of ya'll are

active in doing fundraising and coordinating things thru out the US, and I

could use some help. I am a good follower, but am a bit hesitant when I

have to lead. Any suggestions would be appreciated. Thanks, (n,

15, systemic)

[Guest guest]

sorry i forgot to sign off please just let us know

my email orwranglerbabe2002@... home number is

541-680-5938

rosetta ( mom to Dakota 3 systemic)

--- WILLIAM PRICE <bc.price@...> wrote:

> Okay gang, I need some help. It all started about a

> month ago when I was surfing the web on the

> Arthritis Foundation's website. I came across a

> name of a woman who was put over the state of

> Oregon. Our chapter shut down two years ago, and we

> have been left high and dry. I emailed this woman

> from national, Judy McAbee, and one thing led to

> another and she flew out here. We had a meeting last

> night at our local Children's Hospital with her, the

> hospital social worker, and about ten parents. We

> are trying to put together a task force for JRA and

> I am supposed to co-chair it. We are also going to

> try to have the Arthritis Walk in May. I know a

> number of ya'll are active in doing fundraising and

> coordinating things thru out the US, and I could use

> some help. I am a good follower, but am a bit

> hesitant when I have to lead. Any suggestions would

> be appreciated. Thanks, (n, 15,

> systemic)

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Ashlee,

I saw your original email to the list when I was out of town. I meant to

reply when I got home, but then got caught up in all the Thanksgiving

preparations.

It's great that you are on the Lynchburg Walk committee. Congratulations

for being involved! I do think that the more involved we parents are, the

more likely it is that people will finally get it that this is kids' health

issue, too.

I am so glad that you are now seeing the rheumy at UVA. I think you'll be in

good hands there. I've heard excellent things about Dr S. I was saddened,

though, to read that Madison's diagnosis had been changed to poly. How are

you and your husband holding up with this change?

Liz

advice needed on starting up a JRA network

Okay gang, I need some help. It all started about a month ago when I was

surfing the web on the Arthritis Foundation's website. I came across a name

of a woman who was put over the state of Oregon. Our chapter shut down two

years ago, and we have been left high and dry. I emailed this woman from

national, Judy McAbee, and one thing led to another and she flew out here.

We had a meeting last night at our local Children's Hospital with her, the

hospital social worker, and about ten parents. We are trying to put

together a task force for JRA and I am supposed to co-chair it. We are also

going to try to have the Arthritis Walk in May. I know a number of ya'll are

active in doing fundraising and coordinating things thru out the US, and I

could use some help. I am a good follower, but am a bit hesitant when I

have to lead. Any suggestions would be appreciated. Thanks, (n,

15, systemic)

[Guest guest]

We're doing ok. The past few months Madison has woke up EXTREMELY stiff and

couldn't even walk to the bathroom. I had been debating changing Madison's

Ped Rheumy but I really liked her old docs personality. Then I decided that

this was my daughters health and her old docs personality meant absolutely

nothing to my when Madison was in sooo much pain. We saw Dr. S Nov. 9 and

we go back next thurs. dec. 9. He is wonderful.VERY nice and he sat in the

room with us for at least an hour just talking about arthritis and her new

meds so we were VERY pleased!!!! She's now on Prednisone and Methotrexate

by mouth and she can actually walk to the bathroom in the mornings now! :-)

A lot of her swelling has went down and she isn't stiff as much. I hope he

takes her off the steroids when we go back next week.

As for me and my husband well we're just going with the flow.that's about

all we can do right now. We knew that she was worse and it wasn't a shock

to us to find out she's a Poly. My husband is soooo afraid that she won't

outgrow arthritis but I just tell him only time will tell and she still has

a great chance of out growing it.

How is your daughter doing now? I also saw her picture on the Arthritis

Foundations website.she's a doll!

Hope all is well and thank you so much for replying!

Ashlee

advice needed on starting up a JRA network

Okay gang, I need some help. It all started about a month ago when I was

surfing the web on the Arthritis Foundation's website. I came across a name

of a woman who was put over the state of Oregon. Our chapter shut down two

years ago, and we have been left high and dry. I emailed this woman from

national, Judy McAbee, and one thing led to another and she flew out here.

We had a meeting last night at our local Children's Hospital with her, the

hospital social worker, and about ten parents. We are trying to put

together a task force for JRA and I am supposed to co-chair it. We are also

going to try to have the Arthritis Walk in May. I know a number of ya'll are

active in doing fundraising and coordinating things thru out the US, and I

could use some help. I am a good follower, but am a bit hesitant when I

have to lead. Any suggestions would be appreciated. Thanks, (n,

15, systemic)