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

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

This is excellent. With a 501c3 lots of companies will do matching donations (my spouses company does!)

Great point on the matching Marietta!

Well done and good luck with the 501c3 application. For of us who rely on your sites for information and support that, quite frankly, we cannot get elsewhere you have provided a wonderful resource and have done so generously. By listing your entity as a charitable organization you will be able to further elevate the cause of this forum and of all the diseases and disorders you help out.

I would like to offer you a sincere thank you for running a wonderful service and for finding such marvelous volunteers for each support community. I don’t think it’s possible to measure the impact your sites make on countless individuals. Once you’re registered I’ll be happy to send a check!

what a great note janeatiu. means a lot. :)

I'm spreading the word that donations to the site would be an awesome Christmas gift as a remembrance for those we've lost in our family, who suffered with PsA. My father and my grandmother battled this for at least thirty years that I am aware of. Everyone has been so great to me and I'm a newbie. Thank you so very much.

Great news! Please keep us informed and good luck !

Good Luck! I worked for a non profit community outreach program here and grant writing is FUN! not! lol :-) I think one of ours was 26 pages long..........

Huge thank you on spreading the word on donations CrazyLady! Here is the place to donate: http://bensfriends.org/donate

If you wait a few days, we're updating the page with a video and everything. :)

Nice!!! It was about time!!

Now, how about putting an ad on the side to direct people to either send a contribution or get their companies to sponsor?

Wonderful news!

And a FANTASTIC idea about Christmas gifts in the form of donations! I'll definitely be sharing the link with family and friends. :)

My company does a lot of charity walks and fundraisers. I will send an email to the gal who organizes that, and see if there is something that we can do to help in the interim.

Hi GrumpyCat, I would love to get some tips from your people.

Great idea on the ad on the side of the site. We'll set that up. In the past we have been very hesitant to ask members for money but I think we're at the point where we need to.

Christmas gift donations is such a great call!

thanks for all the awesome ideas!

Some of us are fortunate enough to be in the position to donate. I gave during the last drive, even though it was supposed to not be for patients. I think it would be great to have several donation options, like a few of my other sites: a subscription (as little as $1/month) or a one time payment (some people do this as a "tip your bartender" icon). Having a button set up at all times, and then a brief reminder every other month, works great on other sites. Many companies have charitable giving drives in the winter, and now that Ben's Friend's is set up as a non-profit, we can do matching gifts from companies that do that.

Scott Orn said:

Great idea on the ad on the side of the site. We'll set that up. In the past we have been very hesitant to ask members for money but I think we're at the point where we need to.

Christmas gift donations is such a great call!

awesome ideas Marietta. we have kicked around an idea of $2 for 2 people. Meaning you give $2, 1 for yourself, and 1 for someone who can't donate.

I like the ideas of simple buttons and recurring subscription. We actually have that on the Ben's Friends homepage (www.bensfriends.org), but again we have tried to stay away from asking members.

Above all, thanks for your generosity. Many other members donate even though we don't ask and we're very grateful for that.

Are you responding to people who donate? I donated awhile back and didn't receive a confirmation that you received my donation. I'm not concerned because I can check my credit card statement, but others may appreciate getting a notification.

Just a thought,

Hi Frances, I send a handwritten thank you note to every single person who donates! I must have missed, you. I 'm so sorry. What was the email you did the transaction under. I think you're supposed to get a confirmation email as well. send me the email address if you don't mind.

Now I'm concerned you never received my donation ??? I sent you my e-mail info through a message. I'm not concerned about a thank you note or anything, just want to ensure you received my donation.


This group had a great idea about the small recurring donation to those who can afford it, which we implemented! Thanks for the brainstorming! Our member fundraiser launches this week. Here's a preview: http://www.bensfriends.org/donate.