Update on Ben's Friends Non Profit Status - October 2013

General
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We wanted to let you know that last month, we (Ben's Friends) submitted our application to the IRS for 501 C 3 Non Profit Status. The 501 C 3 status will allow personal donations to be tax deductible and will put us in contention for many Non Profit Foundation Grants. We're very excited about this because it will allow us to start many more communities to help patients! We all know there is a ton of love and support on these sites, and we want to bring it to more people across the world.

For those that don't know, Ben's Friends (www.BensFriends.org) runs 35+ separate support groups for patients with rare diseases. Every month we are helping about 80,000 patients and friends/family members, which is far beyond our wildest dreams when we started six years ago.

To date, the folks behind the scenes have contributed about $30,000 of our own money to keep Ben's Friends going. We've been incredibly fortunate to have raised another $50,000 in donations. So over 6 years we have spent $80,000 total to help tons of people. We've never taken a salary or any form of compensation, this is something we love to do. Ben's Friends could never have succeeded on such a small budget without the wonderful volunteer moderators who make the communities go! Thank you Moderators! Please take a second to thank the volunteer Moderators on your community. They are truly incredible people!

We have a great lawyer who did all the paperwork and is shepherding us through the Non Profit Process, and she is donating all of her time for free (pro bono). We have petitioned for an expedited review (not favorable treatment, just a faster review of our application). If we get that, we could be approved in 3 months, if not, it might take as long as a year and a half. If you have a contact at the IRS, we would love to talk to them. Again, we are not asking for favorable treatment, just a faster process.

We will continue to keep you updated on the process. Thanks for all the love and kind words you send us every day. The people on these networks are so special and we're privileged to be a part of it.
Please let me know if you have any questions. We're all in this together.



Ben Munoz, Scott Orn, Eric Kroll, John Stamler & Haley Gallant
Co-Founder, Ben's Friends
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Great, great work moderators and founders. Suggestion? Can a neurologist or specialist weigh in somerimes?

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A HUGE thank you to all! This is a great site, with wonderful people for support and understanding!!! How can one donate? ;o)

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Thanks, Y’all.

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I am glad of this site because the members know what having Ataxia is like and all its frustrations.Drs and Neurollogists mean well but it is understanding I need,especially about a disease which is rare.I don't feel as if I have a label that Joe Public understands.It is not easy explaining something from your mobility scooter when you have such diffculty talking.

People say write it down when you cannot write either.All avenues you used to use have been cut off and then you are told off for being negative.

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Thanks for the kind words everyone!

Rose if you would like to donate, you can do it here: http://www.bensfriends.org/donate/

if you want to wait a few days, we're updating the donate page with a view and new program. :)

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Well said Marie! Thanks for the donation info link Scott! ;o)

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Hi Scott!

Well done you lot for all you have achieved and many thanks. xB

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Seriously, besides all the fun people have/had at ataxia events and the pretty words, and the wads of money that get raised in our name, is there a bottom line???

Last night, on TV, There was a segment from Sky News about cures of degenerative brains (which bring on Alzheimers apparently) in mice. I think it said that in ten years this should translate into a medication 4 humans. Why so long, I wonder. This earth-shattering research is being done somwhere in the UK. Is NAF or anyone aware of this???Maybe its in the newspapers in London. I am surprised that no one mentioned it. It seems like there is all this excitement over somerthing but then poof, its irerelevant and forgotten and when one goes to the neuro, they look at you blankly.

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Yes Neta, I agree, why does it take so long for there to be a breakthrough for humans? Information would be highly welcome, so those with ataxia would be in the know, and have some understanding as to what's going on! This is the first I've heard, and I don't see my neurologist until January, 2014. Hopefully, he'll have heard and have some positive information...,;o)

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You are the only one who responded. I have an appt sooner but I expect he will look at me with the same blank face like I am speaking Chinese and tell me there is no cure and nothing to do. I think what's wrong with this site is the lack of a voice-in-the-know N

rose said:

Yes Neta, I agree, why does it take so long for there to be a breakthrough for humans? Information would be highly welcome, so those with ataxia would be in the know, and have some understanding as to what's going on! This is the first I've heard, and I don't see my neurologist until January, 2014. Hopefully, he'll have heard and have some positive information...,;o)

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Anybody else have an opinion of this please? ;o)