No shame in my game, advocacy pt 3
For this post, I am asking everyone to leave their shame at the door. Hang it up on the coat rack, throw it next to the shoes, I don’t care what you do with it but there is no room at the inn for shame today. Are we good? No shame to be found? Great! We’ve made it to my fifth and final pillar of epilepsy advocacy: fundraising. There was a time in my life when I never could have dreamed of asking people for money. Then I held my daughter while she was seizing and screaming. There was no way I could make the seizures stop or tell her it would never happen again and you know what? Adelaide’s seizures cured me of my shame. If I can’t make her seizures stop today you better be damn sure that I will do everything I can to raise whatever money is needed so that we might be able to stop them tomorrow.
The easiest way to ask for donations is through an organized fundraiser, but that doesn’t mean it has to be complicated or require an event planner and massive budget. I’m sure you’ve seen that over the last year Facebook has asked you on your birthday if you would like to include a cause and ask for donations through their Giving program. This same idea can be instituted outside of Facebook as well. In lieu of gifts for Adelaide's birthday we asked for donations. Evite even had an extension on their website that managed it all for us! Another low stress fundraiser is to host a direct sales party through the likes of companies such as Pampered Chef or Stella and Dot. My amazing mom, with the help of her generous friend, hosted one last week! You can ask your school to get involved by promoting spirit days to benefit a non-profit: in order for the kids to participate in the themed attire days they have to donate a dollar. Genius! I’ve also been invited by folks to speak about epilepsy at their place of work over the lunch hour. Donating is encouraged and some companies will even match! Then of course there are events: from carnivals to 5k races to concerts, comedy shows, dinners, wine tastings and more. Start small and build up to your dream goal event. When trying to figure out what kind of fundraiser to host think about who are your contacts? From who can you ask favors? Work within the connections you have to keep the event profitable for the charity and as simple and fun for you. It’s inspiring to watch fundraisers hosted by families in their neighborhoods grow over years to include their town or even the entire country. Check out Ella’s Run and Lemonade for Livy when you get a chance. Two awesome, family-originated, epilepsy fundraisers.
Now, of course, to whom do you donate? There are dozens of epilepsy organizations out there that need our support and perhaps there is one in your community that is really making a difference for your family. As a Citizens United for Research in Epilepsy (CURE) board member, I would be remiss if I didn’t highlight the Cervantes family’s non-profit of choice. Epilepsy has been recorded dating back to 2000 BC, yet here we are, thousands of years later and the most widely used treatments are still just band-aids on symptoms. I don’t want another prescription that comes with unbearable side effects. I. WANT. A. CURE. I realize this is a bit deceiving since epilepsies are more like cancers in the range of causes and types - but until we understand the variety of root causes how can we expect to treat or cure any of the resulting conditions?
This is where CURE comes in. For the last 20 years, CURE has funded the basic research that got the epilepsy world talking about SUDEP and Infantile Spasms before they were mainstream topics in our community. Now we have amazing organizations like The Danny Did Foundation, and The Child Neurology Foundation’s Infantile Spasms Action Network, who have taken the lead and run with these much needed areas of focus. The torch is passed and CURE moves onto the next aspect that needs a spotlight.
Coincidentally, next week we will celebrate Giving Tuesday, one of my favorite holidays of the year, (It’s as if I timed this post…). This year when you give to any organization through Facebook, start a Facebook Fundraiser, or donate to one on #GivingTuesday, Facebook and PayPal will match up to $7 million of donations starting at 8:00am EST. Then, any donations made specifically to CURE through Facebook will be matched again by a generous donor! Just watch your money multiply like rabbits in the spring. Of course, donations are also greatly appreciated outside of Facebook as well #notpicky. Regardless of how much you can give or which organization you give to, I ask that you give something and let people know that you did - you don’t need to share the amount you gave, in my opinion its more powerful if you don’t, but let people know the organization that you gave to and why, give them a link and ask your community to donate as well.
I’ve been floored by how supportive our friends and family have been of our various fundraisers. Aside from knowing our family or reading this blog, many of our supporters are untouched by epilepsy. But they care about us and they want to help. We can’t be the only ones with a compassionate and generous community. If you share your story and the organization that is making the biggest impact in your life, those around you WILL step up - but you have to ask first. Yes, asking for money is awkward but it is is nothing compared to the amount of pain, distress and discomfort those with epilepsy feel in their lives. If it means asking family, friends, casual acquaintances and complete and total strangers for money so that we can hope to bring Adelaide relief, then, gosh darn it, I’ll do it. See ya shame. I’ve got fundraising plans and you are not invited.