Re: Re: advice needed on starting up a JRA network

[Guest guest]

At the risk of starting trouble~~~

I don't believe that the AF or the AJAO have become useless at all. There's

a lot of good work going on and there are a lot of dedicated folks~~ staff

and volunteers~~~ out there doing that work. Some things have changed as the

organization has changed, but that happens everywhere. Dr Klippel (AF CEO,

formerly the medical director) has publicly stated, by the way, that JA is

to be a major focus of the AF.

As always, organizations, especially nonprofits, can only do so much.

Volunteers, or lack of volunteers, can have a huge impact on what can be

done.

Liz

Re: advice needed on starting up a JRA network

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]

My personal experience with the Arthritis Foundation has been EXCELLENT.

I'm sure that it's different in each state. So I think you should

definitely check with the AF and it actually sounds like you already have.

My 2 cents anyway! :-)

Re: advice needed on starting up a JRA network

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]

It is a group in Kentucky that stands for Facing Arthritis with Compassion,

encouragement, and support. It is very active with young adults, adults and

children. They do lots of activities and fund raising. They have beautiful

blue shirts for sale that I wear when it is warm here in Oregon. I just

wish they said " Oregon Chapter " on them instead of Kentucky. Someday maybe

we will get our act together here in Oregon. (n, 15, systemic)

Re: advice needed on starting up a JRA network

>

>

> >

> >

> > 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]

Hello and boy am I late on this response and I do apologize. Its Christmas

time, I am newly married and FACES just had our annual Holiday Party so I have

been quite busy of late. I do hope all are well and warm and looking forward to

a joyous Holiday filled with hope, love and laughter. I am responding to the

post regarding starting a JRA network. At age 32 I had been a JRA vet for 27

years and never had met another child, teen or adult with JRA. I was fortunate

enough to meet a woman who was the program director for our local AF. I began

to volunteer and do some speaking for the AF and eventually landed at my first

AJAO conference where I met many wonderful people just like me! I only sound

excited because I was no longer alone in my battles with the monster JRA. I

came back to my home state of KY and knew I had to do something. If there were

1100 in DC at the conference surely I was not the only person in KY with JRA. I

began my journey to start a JRA Network by contacting our local newspaper. I

explained my story and before I knew it I was plastered on the front page of

our local paper along with a shortened version of my life with JRA and my

desire to meet others be it young or old. I knew there had to be some folks in

my

local area and there was. The calls came in. We set a first meeting and six

years later we are stronger than ever. My recommendation for you would be to

call

every newspaper, large or small in your area. Tell your story and hope they

bite and share your story with your community. Contact TV stations as well.

Keep in mind the walk is in May but the first week of March is JAAW (juvenile

arthritis awareness week) and this is an excellent time to contatct your local

media. Be willing to talk and share the bad as well as the good. I hope this

helps and if your journey has begun I hope it was successful, if not keep on

trying. Your voice will be heard!

Whatever you do , keep on keeping on!

hang tight and hang tough and if I can help please email me and I promise to

be quicker on it.....hugs to all!

Donna