Today’s post is from Sean Vora, a Causes activist. We met Sean at a Causes meet-up here in San Francisco and were immediately inspired by his energy and excitement for his cause, and by the innovation (and alliteration) he’s bringing to the platform. To watch the fundraiser in action, we’ll bring you a few posts from Sean over the coming weeks — here’s the first part of his story and the welcome video to his cause.
Hello everyone! My name is Sean Vora, and I’m excited to have this opportunity to tell you about a cause I started a few weeks ago to benefit the National Foundation for Ectodermal Dysplasias (NFED) – the Follicle Fate Fundraising cHAIRity! I was born with a rare genetic disorder called hypohidrotic ectodermal dysplasias, and because of this disorder, I have sparse hair, grew up with few teeth, and am unable to perspire. I’ve been involved with the NFED for 25 years (since I was 3!), and decided I wanted to take a more active role in raising awareness and giving back, so I started this fundraiser to help assist them with research, treatment, and scholarships. The Follicle Fate Fundraising cHAIRity ends on July 31, 2011, and I encourage you to check it out!
The Follicle Fate Fundraising cHAIRity began after growing out my hair (and beard, as “moral support” for my hair) for four months for a research study with Edimer Pharmaceuticals, a company working on a treatment for X-Linked Hypohidrotic Ectodermal Dysplasias. I had also been involved with the NFED to see how we could utilize social media to connect people and spread information, and a week before the study, an idea came to me:
What if I start a fundraiser where at the end of the study, the top donors choose how I cut my hair and beard for me to wear in public for a week?
The decision came quickly: Instead of shaving my head and beard and resuming normal life after the study as originally planned, I opted to keep my crazy hair and beard and rally people to donate to the NFED for a chance to determine my “follicle fate” through my fundraiser on Causes. I consider it an Internet-driven version of the carnival dunk tank, but for a good cause.
Once I settled on the “Follicle Fate” name, I set out to create a consistent web presence across Facebook, YouTube, Twitter, and Tumblr, and e-mailed the NFED and my friends to let them know what I was doing and see how they could help me. The next day, I signed up for Causes and started to explore how an individual trying to make an impact could utilize all their friends to have a wider reach and create a broader membership and donor base. When I discovered the Hall of Fame and saw that it tracked Top Donors, Fundraisers, and Recruiters, I knew that Causes would track all the information I had planned to monitor, and was perfect for what I had in mind. From there, I tailored the details of my fundraiser and contest to revolve around all the features Causes had to offer so that all the information was transparent and easy for everyone to see.
Early on, I knew that I wanted to reward every member for their participation and involvement by giving them “Thank You Prizes” (as described in the Follicle Fate Contest Details), so that even if someone couldn’t donate, simply joining and recruiting their friends would make a difference and raise awareness. I used the Hall of Fame data to create a “Prize Tier” system similar to those seen in Kickstarter campaigns, where different donation amounts reward each donor with “all of the above, plus some new prize” as they contribute more. I decided to make all the Thank You Prizes things that I could do on my own that involved time and effort, but not money. The prizes are personalized, and range from pictures, videos, stories, songs, and even music videos – all with me thanking them for their support. If all goes according to plan, I’m going to have an extremely busy, but gratifying (and creative!) summer!!!
My hope is that after this inaugural fundraiser, all the members will feel a deeper connection to the cause and the NFED, and will be more likely to stay involved. The prizes will incorporate pictures and footage of me with kids and families from the NFED Family Conference this July to highlight who this cause benefits, so with any luck, this may help with a late surge in membership and donations. Of course, once the infamous haircuts take place, I think that will leave an impression on everyone! I know this is a great way to establish and further the members’ connection to my cause, and even if people don’t donate because of the Thank You Prize incentive, I think it will really stand out as something unique to keep them involved and make them feel good about doing something beyond just joining my cause and forgetting about it.
That’s all for now so thanks for reading — here’s the welcome video to my cause to learn a little more.