WEDNESDAY 'S WORKSHOP

[selmaS]

lets get all our ideas for making money ...things we with chiari can do.....and make a difference!

this is what Shane started on another thread.....so let's run with it......

[sheila53213]

Not sure if this will help or not but I currently sell PartyLite Candles and Accessories and we offer fundraising.....with 50% of the profit going back to the organization right away. We can maybe do this for an individual to help with their airfare or hotel expenses or donate the money to Chiari research.
I'm still in the brainstorming phase with a few others locally here to do a Spring Bazaar or something to raise money for Chiari.
Let me know if this is something that may or may not work.

[merlot3106]

I don't know if this is something that will raise a lot of money but it is an idea I had. Please let me know what you think.

My son is 18 and in 2 heavy metal bands and play concerts at many different venus in the ohio area. He is in contact with quite a few bands local and national. Columbus and the surrounding area have hundreds of talented musicians and many of them are heavy metal and my son knows a lot of them. I was thinking maybe to do a fund raising concert. I know my son and his friends would do anything for me. I also know that Elizabeth has a son that is a very talented musician and I mentioned the idea to her and she said she was thinking the same thing.

If you thiink that would be a good idea please let me know. If you don't, no hurt feelings here :) If you do like the idea and have any suggestions on how to set this up I would appreciate it.

Thanks Selma :)

[selmaS]

I hope all are working on their stories we will be needing them soon so if urs is ready and u haven't let us know....please do so here.

Also, u can break ur story into parts...ie:

b4 and up to dx.....
getting dx'd.....
treatment......
after treatment and follow ups......

what ever works best for you. The stories will be used to get awareness for chairi and related conditions.

[selmaS]

))))BUMP((((

we can create awareness by getting involved in local support groups.....they do fund raising......

[selmaS]

Lori,

There r diff orgs that help with this like " wishes and rainbows ","Angel flights."....( I have added these to the links page within the health pages)..ect.
SOme of the money from the stamps does go to aid patients also. We need to do as much as we can, right now collecting the stamps is pretty easy.

As time goes on, I'd like to increase what I do to help bring awareness and also make money for myself...I am out of work and it is tough not having that income.

Sorry to hear about ur friends DH, but he did make a difference to many I am sure...so what he did do was of great value.I pray someone else picks up where he untimley left off.
we also need to get more NS trained and informed on chiari I, 0 and related conditions like tethered cord, syringomyelia, pusedotumor cerebri ect.

"selma"

[lor124]

Selma,

I know research is very necessary, but I would like to see if there is a way money could be made to help patients get to their doctors or get the medical care they need when they have no funds or insurance to do so. I have a friend of mine who's husband would fly seriously ill patients to their doctors or fly to go pick up organs for transplants. I know how important that was to him. Unfortunately we was on his way to pick up a patient when his plane had trouble and he crashed an died in Ohio. There has to be more ways to get help to those who need it.

Lor124

[selmaS]

collecting  cancelled postage stamps all yr.....this helps chiari research.