Fundraising is a top priority for any foundation or organization delivering programs and services to the rare disease community. The world of fundraising contains a variety of avenues to pursue, but how do you make your organization stand out from the crowd? This webinar will walk through some best practices for applying for grants, creating fundraising events and building an individual donor base. Join this Webinar to learn how to make your foundation competitive and sustainable!

If you are unable to attend the live webinar register anyways and you will receive a link to the recorded content.


Lindsay B. Groff, MBA, Executive Director, Barth Syndrome Foundation
Lindsay Groff was inspired to work for an organization dedicated to helping children that suffer from rare health conditions when her own daughter, Charlotte, was diagnosed with a rare birth defect. Her experience with raising a medically fragile child, coupled with her education and experience, brought her to the Barth Syndrome Foundation (BSF).

Lindsay has been the Executive Director of the Foundation since 2011. She directs the staff and resources of the foundation in pursuit of the mission – saving lives through education, advances in treatment, and finding a cure for Barth syndrome. In addition to setting the vision for and directing the operations of the organization, she is responsible for creating the structure and processes necessary to implement its long-term strategic objectives. She leads a robust philanthropic program that includes major gifts, direct response, foundation/corporate support, events, and grassroots fundraising activities. Lindsay’s passion for nonprofit management, patient support, advocacy, fundraising, and marketing has fueled her career.

Prior to her leadership at BSF, Ms. Groff was an Executive Director at Fernley & Fernley, an association management company in Philadelphia. A proud native of New Jersey, she earned an MBA from Rowan University, as well as a bachelor’s degree in marketing from Rutgers University.


Rebcca H Davis, PhD, CFRE, Davis Non-Profit Consulting
Rebecca has more than twenty-five years of professional experience in academic and non-profit settings in fundraising, event management, volunteer coordination, adult education, research, and writing.

A graduate of the AFP Faculty Training Academy, Rebecca is a Master Trainer who has been a Certified Fundraising Executive (CFRE) since 2007.

She holds a PhD in political science from Emory University in Atlanta and is the author of Women & Power in Parliamentary Democracies: Cabinet Appointments in Western Europe. 1968-1992 (University of Nebraska Press, 1997) and the editor of the textbook (Stand! Contending Ideas & Opinions in Comparative Politics). The research and data analysis skills she developed while in graduate school have served her well in analysis of program outcomes, donor engagement, strategic planning, and finances for nonprofits.


Daniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard,, and other national publications.