Interested in the results from the National MPS Society Fundraising, Member and Host Survey?  Click here to find out!

Comments from Survey Participants:

• “Promote regional gatherings as a way to get regional/area families talking about fundraising together. Pharma/Hospital sponsored gatherings like the one in Chicago should offer an opportunity to have the Society speak about the Society and its program, including fundraising”

• Mini Concerts, fairs, raffles

•None, I think the Society is doing well

• At the conference offer a brief class or seminar regarding fundraising policies, procedures and methods

•Feature successful fundraiser in each quarter of Courage magazine with the story of their first event, things that worked and those that did not, give advice.

•“For Komen Race for the Cure and Make-a-Wish, etc., it seems that the organization comes to town and puts on the 5K, and we just have to attend and get others to attend. I have always wished that there was a 5K event planner that went from region to region organizing 5Ks, but I suppose that would cost money for that person’s salary. I would love to attend a MPS 5K and ask all my friends and family to attend, but I am too nervous to host one myself.”

•“Simple. Small. Quick. Like a button or something for facebook that my friends can click on to instantly donate $5 through paypal.”

•“Something new and special that will raise awareness (not only funds) for the society”

•“Additional small fundraising event fundraiser ideas. I will consider the “Mobile Causes” and the Courage Pages”

•“Board member hosted event within our region, that we can practice helping with before sponsoring our own fundraiser”

“Big fundraisers (beyond the walk/runs) that have people dress up and give lots of money require alcohol to be successful in my opinion. The society needs to find a way to support this very important feature of a fundraiser as it loosens people up to network better and give more. The families who hold fundraisers should not have to cover the bar tap out of pocket when they bring in enough money to meet expense guidelines. Most big companies allow employees to charge in alcohol when it is used to increase business and network, why can’t the society do the same. Is it a religous issue? I am sure that big charities find ways to include drinks at big galas and have seen NORD and others provide open bars at their events so I don’t think this is a non-profit issue.”

•“I’m in a new location and have tried to reach out to families in the area interested in joining us to fundraise however haven’t had much luck. Maybe offering some sort of incentive for multiple families joining forces to fundraise would be beneficial?”

•“This is not a survey. This is a marketing tool. This is not about how the society can serve patients and families. This is about patients and families serving the society. Yes, it’s a two way street, but this survey is a poorly dressed up marketing gimmick. Please don’t waste my time.”


Fundraising is critical to the National MPS Society. Our fundraising is done by volunteers who are members, friends, and supporters of the Society. The monies received from fundraising enable the Society to fulfill our mission of providing support to families affected by MPS and related diseases, supporting medical research that will one day find cures, and increasing public awareness of the diseases.

We have been providing assistance to families for more than 30 years and will continue to do so for many years to come. Our ability to hold conferences, provide resource information, help families connect with other families, and offer grants for research is made possible by generous contributions from individuals and organizations.

The National MPS Society is a nonprofit corporation as described in Section 501(c)(3) of the Internal Revenue Code and is exempt from federal income taxes under Section 501(a). It is an organization that is not a private foundation under Section 509(a) and qualifies for charitable contribution deductions by individual donors as stated in Section 170. Our 501(c)(3) number is 11-2734849.

For more information on events please review our Between the Issues! These wonderful publications highlight our 2012 Events!