JA conference--worthwhile?

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Tris9803

Posted Sunday, June 07, 2009 2:55 PM

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Last Login: Sunday, June 07, 2009 10:58 PM
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Has anyone gone to the national conference in the past? I'm trying to decide whether to go this year. We have never been and I don't want to put a lot of money for airfaire etc. unless it is worthwhile. Anyone out there a past participant, and have suggestions/recommendations?

Thank you for any information!

Post #4207619

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Vicky

Posted Sunday, June 07, 2009 8:27 PM

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Hi there. While we have not yet gone to a nat'l conference, we did attend a local Juvenile Arthritis Family Networking Event, and it was excellent. Well organized, tons of info, and most importantly, the opportunity to meet people in your same boat (although each case is different, you learn so much from other people's experiences). I would go in a heartbeat. I think the next one might be in NYC, or NJ next year, which is where I live, so I'll definielty attend. Good luck!

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Laura Faust

Posted Monday, June 08, 2009 1:27 PM

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Last Login: Friday, September 11, 2009 1:58 PM
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Hello - we have not yet attended - I always thought my daughter was too young. I have recently talked with several families who attend every year and others who go on and off. They say it is completely worthwhile and highly recommend it. Great for the kids to feel they are not different from everyone - but to fit. The information for parents is great as well. We cannot manage it this year - but are planning for next year - no matter where. My daughter will be 6 then. I also have another daughter who is 13 - she struggles with guilt because she is healthy - I have been told that this is great for siblings too...

If you attend, let us know how it was.

Megan

Post #4207776

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EastBay Mama

Posted Wednesday, June 10, 2009 1:02 AM

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Last Login: Wednesday, June 10, 2009 12:59 AM
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Howdy,
Our daughter was diagnosed in April 2003 when she was 1.5. We live in the SF Bay Area and my folks are down in LA and, conveniently, that year the national conference was in San Diego. So we scheduled our summer vacation around it and made all four of the LA grandparents drive down with us and attend. It was really a phenomenal experience for me. I was scared about her/our future and wanted to learn as much as possible, which I was able to do a lot of in just two days. It was great to meet other parents and REALLY great to see all the kids, since you couldn't tell the kids with JRA from their siblings, every one was running around (and they had lots of fun childcare opportunities).

Now that we've been on this "adventure" for over 5 years, it's not as enticing. I did consider going last summer when it was back in CA, but didn't have the same needs to be filled, i.e. I now know quite a bit and am not so anxious about the future (OK, at least for this minute!).

If you're new to the world of JRA or old to it and want to learn more, I think it's a really great experience to have all those doctors and researchers and pharma folks and parents and kids there to talk with and ask questions (and see playing).

Kim
(mom of L - 6 with PsA)

Post #4208087

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Jeri Tellez

Posted Wednesday, June 17, 2009 5:59 PM

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Last Login: Wednesday, June 17, 2009 6:54 PM
Posts: 5, Visits: 10

We're going this year, since we live in Dallas. My son (11) was Dx in February with probable systemic. He spent most of April in the hospital with heart and lung issues, and couldn't be released until I had secured a grant for anakinra (major expensive!)

Part of the reason I'm going is so that my daughter (10) can meet other siblings. I know she feels like she's the only person in the world that has a brother with jra, and she has been a trooper. I'm looking forward to meeting other parents also. I have "chatted" with some online, but meeting people face to face is always better, IMHO.

Jeri

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