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Periodic Fever Conventions?

rybrans07
0 Recommendations

Hi my name is Kim and my daughter Sarah has FMF. I read on someone else's journal that there are Conventions for families dealing with Periodic Fever Syndromes to get together for the weekend. This journal was posted in 2006-which I know is a long time ago, so I was wondering if anyone else had heard of somethng like this? I have yet to come together with other families going through the same struggles. Any replies would be greatly appreciated. Thank you all, Kim

Explore topics in this discussion:

Fever Colchicine

9 replies

Melissa1

My daughter also has FMF. She is now nine. Takes colchicine and fortunately tolerates it well. Would love to chat. My e-mail is myrtlemoose@aol.com

Melissa

JKP

My daughter (4 years old) also has FMF. Please let me know if you find out about any conventions. If youd like to chat, feel free to email kimigabel@aol.com.

rybrans07

I just found out that the convention this year will be on August 22nd and 23rd at the Hershey Medical Center. When I get more details I'll be sure to fill everyone in. Thanks, Kim

noahdavidsjourney

If you go to www.upliftingathletes.org, and email lori.todaro@upliftingathletes.org, they can send you more information about it. Also, check out the press release about Nino's Act. They are trying to pass legislation that will require Medicaid to pay for medicine for kids that have been treated at NIH in studies. Everyone needs to contact their senators and legislators in support of this bill. It is currently in the Senate Finance Committee. If you go to my website www.freewebs.com/noahdavidsjourney there is more info about it on my homepage including a form letter you can send to senators and contact information for senators and congressmen for each state. Have a great day!

mommymanda

Hi if you could let us know anything about the conventions please do. That would be great for all of us I am sure. Definately need a great weekend with others dealing with the same issues.

noahdavidsjourney

They are supposed to be sending me more detailed information in the mail about the convention. I will keep you all informed when I get it.

rybrans07

I am waiting for it to come in the mail as well. I'm really excited about this, to be able to come together with so many families after feeling so isolated for so many years is incredible.

Kim

LishandRod31

Would like the info too! Son with Muckle Wells and we live in PA, Hershy is a few stones throws away.

marylouise

The convention on periodic fever syndromes sounds very interesting. We would love to meet others dealing with the same challenges. Any information would be greatly appreciated.
Thanks,
marylouise

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