We all have our reasons. Sons, daughters, parents and friends—it’s a guarantee that anyone managing this sort of charity non-profit has been touched by the power—and more often than not, the powerless feeling of colliding with the complexities of rare disease. At this year’s RARE Patient Advocacy Summit you’ll take your first steps towards being unstoppable as Zenzaga CEO, Keegan Johnson, brings you the answers and the attitude it takes to create an unstoppable charity.

What can advocates hope to learn at this session?

  • Show Me The Funds: How and where do I get more donors? What makes or breaks a fundraiser? How can I put our organization on a plan for financial growth and opportunity?
  • Get Them Engaged: How can I get people excited about our mission? How can I bring on new volunteers and inspire them? How am I going to get our supporters involved?
  • Can They Hear Me Now? How can I effectively tell our story to help our project grow? How do I generate momentum– Increase member engagement and learn the same strategies politicians and network-marketing experts use to make their visions reality?

Johnson will walk attendees through the ten parts of a solid charity foundation, and speak on missions, goals and strategic planning.

Still think you’ll have questions? We thought so too. That’s why this year we’ve added a new component to each session called Deep Dives.  Deep-dives were created to present more relevant content to individuals and allow people to ask questions and get the most out of each session.

Here are some of the Deep Dives you’ll be able to take part in at the session:


4.1 – Mission, Goals and Strategic Planning  – Keegan Johnson, Zenzaga

4.2 – Org to Org; Finding common ground within the disease community – Nicole Boice, President Global Genes & Lisa Schill, Team RASopathies

4.3 – Where the needs of families and Health Care Professionals Intersect – Robert Miller, Rob Miller Human Service Consulting

4.4 – Twitter: Social Media Strategy – Stephanie Fischer, Senior Director of Communications, Pharmaceutical Research and Manufacturers of America (PhRMA)



4.5 – Creating a Comprehensive Development Plan: Resources and Revenue – Susan Hoover Miller, CFRE, Fundraising Consultant, Former Vice President of Major Gifts, Ocean Institute

4.6 – Grant Writing – Leslie Perovich, Senior Director of Advancement, Pretend City

4.7 –Venture Philanthropy – Is this an option for my disease community? – Debra Miller, Founder CureDuchenne


The Business of being a Non-Profit

4.8 – Build a Board That Can Support Your Goals: David La Greca,

4.9 – Managing your organization’s relationship with its “special” pharma friend: Jean Campbell, JC Consulting 
4.10 – The Concrete Stuff

Legal: Best Practices – Tim O’Connor, Esq. O’Connor Schmeltzer O’Connor

Finance/Accounting: Best Practices – Deana L. Bowden, CPA, White Nelson Diehl Evans LLP

4.11 – People Management; employees, volunteers, building leaders and managing conflict – Andrea Epstein, Executive Director Global Genes


Introducing Keegan Johnson

Keegan_Johnson_Unstoppable_CharityKeegan is the founder and CEO of Zenzaga, a company focused on helping companies, communities and causes around the world to harness the power of “Mass Motivation.” Keegan’s experience in both the for-profit and non-profit worlds, allows him to combine the passion of running a volunteer based charity with the analytics of running an e-Commerce company. Prior to founding Zenzaga, Keegan co-founded Ethoca, a for-profit e-Commerce fraud management company dedicated to eliminating fraud through collaboration. Keegan found out his first born son had a rare genetic disorder, called Prader-Willi Syndrome (PWS). He co-founded a Canadian charity and became the Executive Director of the US charity with a mission to eliminate the challenges of PWS through research.

Can’t attend in person? You can’t afford to miss this! Our new Livestream component will allow up to 5,000 interested advocates from around the globe to attend virtually. The event will be broadcast live with opportunities for patients to participate from afar using social media, including twitter and Facebook. Follow using #2014GGSummit

To view the full schedule of events click here.

To register to attend the summit, in person, click here.