website for Kaylee

[Guest guest]

Hi All,

I don't post often, but read daily. You guys have been great help to

me over the past few years and it is greatly appreciated. I am in

somewhat of a dilemma, trying to find everyway I can to raise

awareness about JA and it is frustrating in my area. No one seems to

care about kids with JA and most don't even know it exists. I have

tried several times to get a support group going and just different

things. I did found and chair the first Arthritis walk in our area

in 2006, but due to lack of support in our town, the walk was moved

to a near by city and I let someone else chair the event last year.

I regret allowing it to be moved to Greenville and allowing the

Rheumy who took over to chair it, but that is a long story. I am

still active in the Tar River Arthritis Walk and this year I am the

Entertainment chair. It is a big struggle here to get people

involved in things other than Relay for Life. I am trying to find

new ways and ideas to raise awareness. That was one reason for

starting the walk, but the rheumy in charge now, is more interested

in sticking with the medical community and getting their money and

not focusing a lot on the awareness at all especially for the kids.

So with all that, I am trying to find a way to set up a web site for

Kaylee, now 5 with poly JA, Uveitis, Osteopenia and Disruptive

Behavior Disorder(DBD). I know some of you have sites for your kids

and want to know how to go about doing it or where to go to.

I really need some help about entertainment ideas for the walk too

and how I can go about getting people interested and wanting to

help. I fee like I am fighting a losing battle and I am very

frustrated and upset by it all. I can not take Kaylee's pain away or

change the way things are for her, but I can do everything possible

to let people know about this awful disease our kids have and put it

in their face that it is REAL! I want to know how to go about

getting some media coverage and a famous spoke person like they have

for Juvenile Diabetes.

Please, please help me so I can be a better advocate for all our

kids and help them all.

" mom on a mission "

Kaylee, 5, JA, Uveitis, Osteopenia, DBD

[Guest guest]

Hi ...first let me commend you for being ONE GREAT MOM. Back when I was a child my mom had no one, no group, nothing and she always did her best to advocate for me at school, at the docs, with friends, family, etc. I am so glad times have changed not only is there more known about JRA, treatments are MUCH better and there is a network of support for those who seek it. Unfortunately, the stigma is still there. It is JUST arthritis. This makes me sick. I have been fighting 39 years and the past 10 years , since finding friends with JRA and a support network I have made it my mission to help. Whether that help is being supportive for others, leaning on others for self support or educating others I am passionate and know what you are saying. I have been on TV, in the newspaper, I have done speaking engagements and argued with politicians in DC. Despite it all I feel my efforts have been at times futal and for nothing because I still hear, "its just arthritis". I do what I do partly for myself but more importantly for the children, teens and young adults coming behind me. I want their road to be less bumpy and their life to be much simpler. With parents like you I know we can do it! Whatever you do I am in your corner cheering you on and if I can be of any help just ask.....

God Bless you!!!

Donna**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Thanks Colleen, your information is very helpful and greatly appreciated. You mentioned lots of things I hadn't even began to think about. You have helped in a BIG way! Thanks very much! I hope to find more time to post more often so everyone will know who I am and I can get to know others better. It just seems that time gets away from me with so much going on.

Have a wonderfule evening!

, Kaylee 5, JA, Osteopenia, Uveitis, DBD**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Thanks Donna,

You brought tears to my eyes, just reading. Sometimes I feel so all alone and know exactly where you are coming from with the "it's just arthritis". I couldn't even get the only local family I know of that has a teenage daughter who has JA to help with the walk or help advocate. I can find no one in our area, which is in eastern NC that their child has JA and understands. I look forward to gathering more information from everyone here and it has been a great help and inspiration to me even though I don't participate regularly.

Thanks to everyone and Don't worry this is one "mom on a mission" to help our kids.

, Kaylee5, JA, Osteopenia, Uveitis, DBD**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Thanks Joann,

I would really appreciate that. I am in Tarboro, NC and Greenville is a 30 to 40 minute drive from Tarboro. That would be awesome if he could help me out some. I am not real familiar with things in Greenville and could really use some help especially in the Entertainment department.

I am working so hard, but seem to be getting no where, but don't want to give up on things as I refuse to be defeated.

I have come along way in the past 2 1/2 years as I am sure you all have had to come a long way to get to where you are now. It is a constant struggle and sometimes I just want to shake people and tell them NO, it's not just arthritis; It's ARTHRITIS! Don't you get it? Some people just don't understand and I think it's partially because we get next to no publicity. One of my priorities is to contact the people who do the Humira and Enbrel commercials and ask, " Hey where are the kids?" See where that gets me!

I'm a fighter and I fight to win, I sometimes have to take a step back and rationalize a little about things and then I am up and going again.

Thanks so much for your help. You have no idea how much it means to me.

Have a wonderful evening.

, Kaylee 5, poly JA, Uveitis, Osteopenia, DBD**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Hi - First let me say - you rock! I think it's fantastic that you aren't letting anything get in your way on your mission. I also think it's a great tribute to you that have stayed involved in walk, even when things haven't gone exactly the way it started out. It's totally people like you who make the event successful, and your efforts in entertainment will be remembered by everybody who comes out for walk. I know how hard it is to compete with events that support AIDS and cancer research... it's almost as if sometimes we get the inferiority complex, like we don't have as much reason to ask. But we do... this is a great cause!!!! As far as getting the word out goes, my best suggestion is to speak from the heart. If you have access to powerpoint or movie maker on your computer, those are both easy programs for making a little slide show movie. You can add

pictures, slides with your story, even music. A powerpoint can be sent as an e-mail attachment... a finished movie maker product can be saved and posted on you-tube. I just saw a new video yesterday, made by a yound girl with JRA. It's got video in it as well, but it's very powerful:

You can also set up a free web site at caringbridge.org. It will let you post updates, and people can sign up to get e-mail notifications every time you update. The site is especially for peopole in our situation... with chronic illness in the family. Or you could also do a plain old blog at blogspot.com or e-blogger. There are many sites that will let you set up for free... you can post stories and pictures and either make the site public or for invited guests only. A little

less low tech method would be to simply write a letter with your story, and include some photos. You could send that letter to the local papers, as well as TV stations. I'll admit that I haven't had much luck with this, but southern California is a big media market. I keep trying though! Maybe in your area, soebody will pick up the story. If you have a health section, or a family interest section, those might be ways to direct your story. Getting entertainment for the walk is hard. Everybody seems to want some money in return! Sometimes, balloon twisters, clowns and face painters who regularly work at birthday parties are willing to come simply so they can hand out business cards after, and have the opportunity to market their trade after the fact. If you have a local kids magazine you can probably find a bunch of these people. We have also had some luck with high schools -

cheerleaders, drum lines, marching bands etc. Not necessarily the whole group, which will require a bus, but maybe a smaller ensemble of ten. We have also had some luck finding groups at the college level. If you have a local music school, they might be able to recommend some students willing to come out and perform - acoustic guitar, trumpet etc. The guests at the walk don't need perfection... they will just be glad to have extra entertainment! We have also resorted to renting costumes of characters and having volunteers go around for photo ops....Last year we were lucky and found a flamenco dance group and a hip-hop group that came out for the walk. They only performed about ten minutes each.... so it wasn;t a huge commitement for them. But the applause was great!!! I hope I have helped in some small way.... I know how futile and uphill it all feels sometime.

But you are doing great work, so don't give up. If there is anything else I can do, please let me know. Best hopes to you- Colleen - mom to Caitlin, 9, systemicttownyvonne <maydo65@...> wrote: Hi All,I don't post often, but read daily. You guys have been great help to me over the past few years and it is greatly appreciated. I am in somewhat of a dilemma, trying to find everyway I can to raise awareness about JA and it is frustrating in my area. No

one seems to care about kids with JA and most don't even know it exists. I have tried several times to get a support group going and just different things. I did found and chair the first Arthritis walk in our area in 2006, but due to lack of support in our town, the walk was moved to a near by city and I let someone else chair the event last year. I regret allowing it to be moved to Greenville and allowing the Rheumy who took over to chair it, but that is a long story. I am still active in the Tar River Arthritis Walk and this year I am the Entertainment chair. It is a big struggle here to get people involved in things other than Relay for Life. I am trying to find new ways and ideas to raise awareness. That was one reason for starting the walk, but the rheumy in charge now, is more interested in sticking with the medical community and getting their money and not focusing a lot on the awareness at all especially for

the kids. So with all that, I am trying to find a way to set up a web site for Kaylee, now 5 with poly JA, Uveitis, Osteopenia and Disruptive Behavior Disorder(DBD). I know some of you have sites for your kids and want to know how to go about doing it or where to go to. I really need some help about entertainment ideas for the walk too and how I can go about getting people interested and wanting to help. I fee like I am fighting a losing battle and I am very frustrated and upset by it all. I can not take Kaylee's pain away or change the way things are for her, but I can do everything possible to let people know about this awful disease our kids have and put it in their face that it is REAL! I want to know how to go about getting some media coverage and a famous spoke person like they have for Juvenile Diabetes. Please, please help me so I can be a better advocate for all our kids and help them all.

" mom on a mission"Kaylee, 5, JA, Uveitis, Osteopenia, DBD

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

, are you in North Carolina, near East Carolina U? If so, my younger brother just graduated from there last fall and worked at a local Greenville paper and at one or two bars in town. I know Greenville is not where you wish the walk was, but I am sure he could come up with some contacts for you that are off the beaten path to help get awareness out there. He was there for almost 8 years. Just let me know.

I commend you and what you are trying to do. I think you are an awesome mom. I am trying to increase awareness where I can and am focusing on my twins club, both locally, state level and Nationally. Baby steps, one at a time is where I am at.

Good Luck and let me know if you want me to talk to him about contacts.

Joann

Zoe, pauci JRA,

From: [mailto: ] On Behalf Of ttownyvonneSent: Monday, April 07, 2008 12:14 PM Subject: website for Kaylee

Hi All,I don't post often, but read daily. You guys have been great help to me over the past few years and it is greatly appreciated. I am in somewhat of a dilemma, trying to find everyway I can to raise awareness about JA and it is frustrating in my area. No one seems to care about kids with JA and most don't even know it exists. I have tried several times to get a support group going and just different things. I did found and chair the first Arthritis walk in our area in 2006, but due to lack of support in our town, the walk was moved to a near by city and I let someone else chair the event last year. I regret allowing it to be moved to Greenville and allowing the Rheumy who took over to chair it, but that is a long story. I am still active in the Tar River Arthritis Walk and this year I am the Entertainment chair. It is a big struggle here to get people involved in things other than Relay for Life. I am trying to find new ways and ideas to raise awareness. That was one reason for starting the walk, but the rheumy in charge now, is more interested in sticking with the medical community and getting their money and not focusing a lot on the awareness at all especially for the kids. So with all that, I am trying to find a way to set up a web site for Kaylee, now 5 with poly JA, Uveitis, Osteopenia and Disruptive Behavior Disorder(DBD). I know some of you have sites for your kids and want to know how to go about doing it or where to go to. I really need some help about entertainment ideas for the walk too and how I can go about getting people interested and wanting to help. I fee like I am fighting a losing battle and I am very frustrated and upset by it all. I can not take Kaylee's pain away or change the way things are for her, but I can do everything possible to let people know about this awful disease our kids have and put it in their face that it is REAL! I want to know how to go about getting some media coverage and a famous spoke person like they have for Juvenile Diabetes. Please, please help me so I can be a better advocate for all our kids and help them all. " mom on a mission"Kaylee, 5, JA, Uveitis, Osteopenia, DBD