Julie: How did you raise so much money?
Marie: Our family spent years hosting fundraisers in all the traditional ways foundations do – golf tournaments, cocktail receptions, silent auctions, you name it, and we have dedicated personal finances, as well. We also spent time helping people in Congress and within the relevant federal agencies such as the National Institutes of Health and Center for Disease Control understand the value of rare disease research and the complex and important connections DBA specifically has to other disease areas. We really did our homework and tracked down as many doctors and researchers that may have known about DBA as we could in the beginning. With them, we formed a wonderful team that has grown remarkably over the years. They have helped us articulate to Congress and the agencies the tremendous promise in researching DBA, both for the children and families living with DBA, but also for communities living with other blood disorders, birth defects and cancer. We are grateful that the researchers and health policy experts within the NIH, CDC and Congress agreed with the research potential and that this work is yielding exciting discoveries for each of these disease areas. There is still a lot to do however and we’re thrilled that buncee has come together as a way to give something fun and useful to people to use, while hopefully also helping us raise awareness and funding we need to cure this disease and help other disease communities find their cure, too.
Julie: What is Buncee?
Marie: buncee® is an online content sharing platform and mobile app that helps users create and share their everyday memories, interests, greetings, digital scrapbooks, and business stories in a fun and social way.
To create a ‘buncee’, you simply log on and open your digital buncee canvas where you can grab a background (ours or yours) and add as little or as much multimedia content as you’d like, then share anywhere, via email or by posting across your social networks with just a few clicks. We provide users with multiple easy-to-use tools to add photos, text, messages or quotes, drawings and online content such as YouTubes, Soundcloud, flickr, Google images and even public Instagram images into a postcard sized buncee, which can be expanded into multiple slides if you like. We also have an iPhone and iPad mobile app, buncee bits, for quick, on-the-go ‘bit’ sized buncee creations. Click here for video presentation (1:20 sec).
Julie: What kind of innovation does it represent?
Marie: Creative communication. In a time when so many of the outlets we use for communication today, the twitters and facebooks of the world, have become more and more truncated, we give people an easy tool to say a little more….share a little more…! We’re a group of people that doesn’t think a “happy birthday” post on your wall cuts it. We appreciate the drive toward quick, digital communication, but don’t believe it should limit our personal connection to people, particularly the people we love. It seems to me there are times where we need to say a little more, be a little more personal, get a message across more effectively, and buncee is a tool to do just that. You can mix as much or as little digital content as you like to get your point across and easily share with one person or all “your people” in just a few clicks.