NeuroTalk Support Groups - Have you ever held a fundraiser? Ketamine treatment possibility? This would be great!

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Have you ever held a fundraiser? Ketamine treatment possibility? This would be great! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/28120-held-fundraiser-ketamine-treatment-possibility.html)

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 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:

Quote:

Just in the past week St Joseph's Hospital changed their policy regarding under-18 patients in regards to the in-patient ketamine treatment, also known as the low-dose or awake technique. Now, as long as you are age 15 or older you can be considered for the program. You have to go through a consultation process, where you fill out medical paperwork from your Doctor and yourself, and then travel to Hot Springs for a consultation with Dr Harbut at the Clinic. While there they will also arrange a psychiatric consultation and an MMPI. Altogether this will help Dr Harbut decide if you are a candidate for the low-dose ketamine treatment. If you are accepted into the program, then he will set up the treatment; usually within a month or two.

You can find out more information on the low-dose treatment, and specifically on Dr Harbut's clinic, by going to;
http://www.rsdhope. org/ShowPage. asp?page_ id=161

You must be patient though as they are inundated with requests and it can take weeks for them to get back to you sometimes.

You can also find some patients experiences there as well. we have a couple more that are going to be put up there in the coming weeks. I just haven't been able to get to them yet.

Peace,

Keith

American RSDHope
National Organization dedicated to raising RSD/CRPS Awareness
www.RSDHope. org

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

: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...

IHH,
I don’t know if you have ever heard of Angel Flight before? They are a charitable organization that helps transport people with a financial and medical need to the places that they need to go to, to get the medical treatments that they need to have. I have a friend that was able to use Angel Flight to get from her state to another inorder to have TOS surgery and treatment...so I know that they don't just provide this help for "life threatening illnesses". Here is their web addy:

http://www.angelflight.com/

There are also...what is the word? Branches?? Hmmm...that will have to do for right now. There are also branches of Angel Flight that deal with different parts of the country. I think that this can all be coordinated through that first site, but just incase, and to give you more options to look at, I tracked down the 2 branches (...I know that there is a better word to use there....) that cover the areas of the country that you are dealing with. Here are the addys for those two sites too:

http://www.angelflightne.org/ This covers the North East part of the country, which includes New Jeresy,

http://www.angelflightsc.org/ And this one covers the South Central part of the country, which includes Arkansas.

Like I said, I didn’t know if you were aware of this group/organization and the work that they do to help people get to the medical treatments that they need. If not, then I thought that it might be something that could help you with the cost of your trip. I don’t know what their qualification guidelines are....but I figured that it never hurts to check things like this out...right?

Anyway...I hope that this is of some help to you. Good luck with your fund raising, and with the qualifying for Dr Harbut’s treatments.

:hug:
Jose

Seems that Roz and I had the same idea....and she was doing her posting while I was doing my looking up and writing. LOL

Great minds and all of that...right Roz? ;)

:hug:
Jose