Have you ever held a fund raiser? Ketamine treatment possibility? This would be great
 

The Ketamine Infusion treatment would give be an 80% chance of signifigant relief for my full body RSD!! I just need some help...

I don't have any of the details worked out or anything, but I had some questions. The Ketamine treatments have become available for RSD patients under 18! The problem is, they are in Arkansas, and I am in New Jersey! So that means a lot of money would have to be raised to get me and my mom to Arkansas, and back for more appointments...

If you had a fund raiser, was it a separate event or did you hold it at a community/ county event?

Did you print out RSD info/ buy brochures to hand out?

Did you get a poster and write out a small version of how you got RSD, the treatments all proceeds would go to, etc?!

Did you play on their emotions/ try to write a "touching story"? How did people respond?

Did you sell things and then offer people to further donate?


How was the overall response/ how well did it turn out? What percentage of the money you needed was raised by it? And, lastly- what was the treatment you saved for (I am looking to tell people about this treatment in short along with the brochures/ info/ story, etc).

Thanks so much, I appreciate it!

If you come across anyone else's fund raiser (RSD patients) sites, please also drop them here. I am interested in building a site as well, and would love to see other patient's sites/ ideas and how they did the whole site/ info.

What a great idea!

I think first thing - you might need to get some sort of a special bank account set up. You might need a trustee or someone to oversee the account. A bank manager should be able to help you or point you to someone who can advise you.

People that donate will want to know that it is real and not just an open account that might be used for general expenses.

There have been scams done that people just ask make up a story and ask for money and it is not legitimate.
That's why you need to have it set up properly and there might even be some sort of legal status involved. Not sure about that though.

I know a few times when local kids have had cancer there is a donation jar in our local store, or they sell wrist bands,car washes, raffles of donated items from merchants {tax write off for them}.

Oh and after you get the account in place contact your local news station- they usually will do a short story on things like this and that gives a plug for your charity/donation site.

Hi
 

Hi there- are you sure you can only get them done in Arkansas? Have you contacted Dr Getson in NJ? I am not sure if he works with teens but in may be worth a call...

You may also want to contact the RSD association regarding fundraising techniques-

Deb

Hi IHI,

Fantastic idea but so sad that it is not covered by your medical fund:mad:
I have not ever seen a fundraiser here for RSD, certainly many for breast cancer etc. Without taking away the impact of breast cancer has on so many people, I just wish that there was the same awareness of our disease and the fact that the outcome for early detected breast cancer is vastly better for the patient than the outcome of untreated RSD in someone:(
I am here for you if there is anything I can do to help.
love Tayla:hug:

Wow... thanks guys!
 

Thanks everyone! If anyone else has ideas, please post them here!


Debbie- Dr. Getson now only does consultations, and charges $300.00, not covered by insurance, for the initial visit. He works along with other doctors (gives them suggestions)- I called and talked to the receptionist as well as having them send out lots of paperwork. He doesn't do Ketamine treatments

Sadly, that won't work. I posted more about him in this old post:
http://neurotalk.psychcentral.com/sh...4&postcount=17


I found this fund raiser... holding runs looks hopeful too...
http://www.firstgiving.com/troyraygrimes


My family and I will be holding fund raisers by: selling my clay creations, my sister's sewing, food, baked goods, refreshments, RSD bracelets/ charms/ mugs/ etc, and hopefully some 3K (or so) runs. In time I hope to have a website set up, as well as newspaper articles run.

There are things that are proving to be hard:
I will raise money so that I can go to Arkansas, see Dr. Harbut (he will evaluate me) and then make appointments to see the psychiatrist and get an MMPI done. Before I even know that I am approved for the treatment I must have money for my mom and I to travel to Arkansas as well as doctor visits... (!!)

I am posting the letter from Keith Orsini that I got via email:



I do have questions on the legal aspects of fund raising, and I am searching the internet for answers. I might come on later and post questions about all that if I don't have answers.

If anyone has held or helped raise a fund raiser, though, what were you able to raise money off of? Have any ideas?

Thank you all SO much! :grouphug:

:hug: Vanessa

I sure do hope you can manage to get the treatment you need, and maybe we can also help to try to draw attention to this once you have all the permissions etc.
Dont forget we also have that Member Enterprises sticky on the Classifieds forum where you can post about what you are doing to raise these funds as well

Praying this works out for you
:)
Cheri

Hi Vanessa!
 

:I-Agree:

Great idea! I do know someone that does this kind of thing. If you have a myspace account you can keep up with everything she is doing, and also contact her through private messages. She will reply, and will help. She is just awesome here is a web address for both hers and mine.

http://www.myspace.com/rotkorsd

http://www.myspace.com/allentgamer

I have done lots of big events, and can help with ideas on organizing, sponsors, advertising and other things like food and entertainment.

I hope you figure out a way.
:circlelove: :hug:

Maybe this could help to any MD appointment out of your area. Much Love, Roz

http://www.angelflight.com/

Don't know about Fund raising...but here is something that might be helpful to you...
 

oops!!
 

:grouphug:

Vanessa,

Good for you to be so proactive to ensure you get the very best treatment possible. I believe you have not been well lately so this takes a lot of courage and strength from you:You-Rock:
As I have said in another post, I think it is so very wrong that you are forced to raise your own funds when you think of some of the bizarre money wasting excercises our governments perform.
Heaps of luck
Tayla:hug:

Go for it Nessy. Sounds a great idea. But wouldn't it be cheaper and mroe effective to have it done in Germany? If you came over my family or Lana would be happy to help if needed so you might only need one ticket out here. I think the full on coma is more effective than the just the awake or low dose one. Great idea to fund raise.

It is so unfair that we have to pay for treatment/ stuff that helps. I personally have spent at least $15,000 since being diagnosed on private medical opinions, different treatments including HBOT and medical equipment. However it has got to a point where I can't afford to finance these things any more and I know that the only thing that is likely to help me is the pump (which I will be evalulated for this month! hooray!).

Good luck with it, will have a think and see if I can come up with any ideas. Maybe we should just write our book and raise money for RSD at the same time?

Love ya

Froggsy xxxxxxx

Great idea, Sweetie!
 

Tayla- no, I haven't been well at all. I had to go to the ER for problems, we've been rearranging meds and all that. It has been rough, especially being so young and trying to get school wrapped up. I have been bed bound more often than not, as well as rarely being able to go out anywhere (which is rough at my age!). Thanks, Tayla! :hug:


ANGEL WING- I didn't know of it until several of you rooted out the web address. Thanks SO much, mom and I have been looking at it- looks great! :) Only thing we were unsure about is if they would do flights for consultations in addition to the actual treatment?

Thanks everyone, you are all great! ;)


Will email you! Wonderful idea, that would be awesome- I already have tons of ideas! :wink:

Vanessa who is your doctor
 

I hope you can see Dr. harbut or Dr. Schwartzman they are the best!Of course I love Dr.Schwartzman he has saved my life! CZ

Right now I see Dr ------- in Bethlehem, PA but for the Ketamine treatments I would see Dr. Harbut. My doctor doesn't do Ketamine treatments right at this time, but he said as things become available he will. I am going to talk in depth with Dr. ----- about the Ketamine treatments from Dr. Harbut. Dr. ------ has to help fill out all the paperwork and such, and I am certain he would agree I should go to Arkansas to get this done.

I wanted to see Dr. Schwartzman but he won't take me since I am under 18 (I am 17), and his waiting list is 2 years long! :eek:

Thanks, CZ! Also, yes, you did answer my questions in the Ketamine thread.

:(


My heart breaks for the young ones with this disease. I can't imagine how I would feel if any of my 6 were to get it. I have often said that I was glad it was me and not anyone else in my family.
I guess one positive Vanessa is that your age may help the outcome of your treatments.---Let's keep fingers crossed for you.
Take care
Tayla:hug:

are you finding anything?

I found a few sites with ideas and tips-
http://www.profitquests.com/FundraisingIdeas.html
http://www.fasttrackfundraising.com/
http://fundraiser-finder.com/
http://www.fund-raising.com/
http://www.stepbystepfundraising.com/

I think it's rough at any age... but I am most frustrated when I think on everything I've missed out on. Even though I have amazing friends who will do anything to help and awesome carers it's not the same as sneaking out of your bedroom window to meet a guy, or going up onto the roof for a sneaky cigarette. Walking in the door and pretending you haven't been drinking. going camping when you should be in class or accidently staying over your boyfriends too long. Instead it's have you got tablets/ carer/ wheelchair/ equipment/ will you be out long/ have you made that appointment/ you can't be serious! you can't sit for more than 2 hours/ where's your brace/ why haven't you got your leg splints on/ Why aren't you on the pressure mattress/ you looked tired I'm turning the computer off now etc etc etc. It is so infuriating.

If you can have the treatment then go for it Ness!!

email you soon babes - my spine is still getting worse and it is driving me nuts so I can't sit for long at the moment at the computer.

Love

Frogga xxxxxxxxxxxxxxx

I know you did have
 

your cute clay items posted here once. Can you post all the items you already have for sale, I know I for one am thinking Christmas gifts and maybe there are others that would be interested in buying gifts from you. You could post the pictures with item number, price and as they sell remove the picture.Or is my mind just to simple and things don't work that way? My son likes to tell me we don't live in Mayberrry.

And I totally agree with Tayla, you should not have to raise your own funds for much needed treatment. Sorry I don' have any thing better to offer. But you are always lifted up in my prayers!!:hug: Carose

I am currently selling vintage jewelry that I repair or redo by using various pieces to form one. I plan to eventually have my own website, for now I sell on ebay. I send proceeds to RSD and RP (another family member has the RP). I hope to one day make more and more but for now, my hands don't work well enough to make many a day. I have had lots of support from friends and family. I started simply by sending an email to those closest to me explaining about RSD and my life and I now get donations of jewelry from people I don't even know. I then create and add to my ebay store for fund-raising. I have only raised $375 so far but for being out there only 1 month, it's not bad. I did pull the heartstrings, but with RSD, I feel we need to do all we can to survive. I was supposedly on lists for ketamine but I continually get skipped over. I was ready to go to Arkansas too but for the amount of money, I will wait and give to research and hope that one day it is a common practice. There are a lot of rules and regulations for donating that I did not know about. Keep all records of your expenses and profits. Good luck, I think that you have a good idea. :D

Carose~ I am in the process of building a web page with my clay critter creations for sale. Please say the word if you are interested! That would be great, Carose! Thanks so much! I will get back with you ASAP! :)


Thanks SeptMystic for the ideas/ your expereince!


And, Jo, we are having some trouble with laws. My mom is going to the town hall today to figure things out, and hopefully things will move along after that. :cool: