Wednesday, August 26, 2015

Do You Know Where your Fundraising Dollars are Going?

Many families who have a loved one with a disability work hard to fund raise for local and national organizations.  We feel compelled to make life easier for those families who are starting a new journey, that for us, has been a normal course of life for many years, and think that by giving money to a non profit, that task will be accomplished.  But do we really know where that money is going?

It is fun to get caught up in the contest of it all.  Raising more money than team x, and earning incentives for fundraising can be exhilarating, but is the money raised really going to help our kids? 

While most groups do a good job with helping out families with a new diagnosis, once the kids get older, the support dwindles down to the planning of social events for kids, like a night out at the movies, an afternoon at a swimming pool, or a holiday party, or maybe a parent outing. While these events are fine and a necessary part of group networking, the amounts budgeted for this usually only account to somewhere between 10-20% of the budget.  So where is the rest of the money going? 

As family members and fundraisers, we not only have the right to know, what organizations are doing with the funds we raise, we have the responsibility to ask questions and hold the group leaders accountable for upholding the group mission. 

I have been on the inside of quite a few non profits, church and school groups as a board member, committee chair, and volunteer, and what I have seen has been truly eye opening.  Some fundraising companies that market to schools give our kids pennies on the dollar to market their products, while they record huge profits.  Instead of buying that $20 wrapping paper or chocolate (that you did not need in the first place), why not just donate the $20 straight to the school?  Other groups try hard, but just don't have the leadership necessary to take the group to the next level.   If you feel strongly: speak up, volunteer, offer advice, make suggestions, be heard.

So, as we head in to the end of the year, and the fundraising season, ask questions before you donate.  Do a bit of research before you fund raise.  What will this money be used for? If there is a program or service that you feel would benefit the group, let the board or committee know.  Don't just give and remain silent.  If you have been asking, and no one has been answering, it should be a huge red flag.  Make sure the group you choose to donate to is going to be a good steward for the money you work so hard to make.  You deserve to have a group that meets the needs of your family.  There are plenty of groups around that are doing it right and making a real difference for those that we love. 

If no one can answer your questions, or respond to your suggestions, it may just be time to find a new group to support.

To find out more about the group that Ben's Brigade is choosing to support this year, go to

UPDATE:  Apparently some groups don't like when people encourage others to stand up for what is right and hold the group accountable to follow their mission statement.  We planned to walk with our local Down syndrome group to celebrate Ben, even though we were donating to a different group.  Unfortunately, our local DS group deleted our walk team and have not responded to any of my emails.  Any group that would exclude a child with Down syndrome from a walk that is supposed to be a celebration for them, is not a group that is being supportive to it's members.  The new board is making a clear statement.  They do not provide support for individuals with Down syndrome, their families, friends, etc.  They only provide support to those individuals with Down syndrome who's families don't rock the boat, don't ask too many questions, don't make suggestions to try to move the group to the next level.