MPS Conference Panel – Social Media
December 2014
Glenn O’Neill, Father to Eliza with MPS3A, and Director of Cure Sanfilippo Foundation
What we did and Tips that might help you:
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Very shortly after diagnosis, we made the decision to open our lives and tell our very personal
story to the world, everywhere we could, including on social media

We knew we had to ask for help...anyone and everyone

We started with close friends and family and supporters about how they might be able to help
(skills in fundraising, accounting, writing, social media, non-profits, graphics, etc.) You might be
surprised at the talents and various skill sets that surround you. Ask them!

Go to the open doors...you will know who/what they are. Those reaching out to you who want to
help, and you can be surprised where they come from. Don’t waste time trying to knock down
closed doors even if you thought they’d be open.

Ask for advice, even on social media. Don't need an introduction.

Try to differentiate your cause or story on whatever might be unique to your situation, and make it
personal

Know your audience & take that into account when crafting messages. For us, it is every person
out there that has never heard of Sanfilippo Syndrome

We decided to tell the story of one family and one girl (ours), for the greater good of stopping a
disease for all children. We hoped others would be able to relate to our personal situation and
imagine what if it happened to them

Never give up hope that these diseases can be cured, and never stop fighting!

Out of the books I read after diagnosis to get started, these four stood out helped the most. I
highly recommend each of them:
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o
o
o
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Jab, Jab, Jab, Right Hook by Gary Vaynerchuk
The Fundraisers Guide to Irresistible Communications by Jeff Brooks
Philanthropy in a Flat World by Jon Duschinsky
The Generosity Network by Jennifer McCrea and Jeffrey Walker
For more on our Social Media presence, see www.SavingEliza.com,
www.facebook.com/ElizaOStory, Twitter: @SavingEliza, Instagram: Saving Eliza