Experience

I am a rare disease advocacy strategist working with nonprofit and industry organizations in the rare disease space.  I have provided mentoring and support for more than 300 rare disease nonprofit organizations and in the areas of business structure, marketing and communications, event planning, and social media training.  I am also the Executive Director and Co-Founder of the Little Miss Hannah Foundation, a 501(c)3, non-profit organization which was created to honor my 3-year-old daughter, Hannah, who lost her battle to Gaucher Type 2/3, an ultra-rare genetic disorder. 

	Rare Disease Patient Advocacy and Engagement Successfully launched the Global Genes RARE Foundation Alliance program, an active collaborative initiative with over 350 patient advocacy group members Mentor advocates on best practices for rare disease organization growth including nonprofit development, patient and family support, research and clinical trials, and community and volunteer building Identify and partner with Key Opinion Leaders and Advocate Leaders to support rare disease groups in need of resources, education and support Public speaking and event moderation on topics of advocacy empowerment, nonprofit building, community development, patient engagement and healthcare education Developed and maintain good working relationships with biotech and pharmaceutical industries, academia, research and legislative partners
	Event Planning and Coordination Coordinate logistics for yearly advocacy educational conferences with up to 500 attendees and 80 speakers Utilize in-depth program management of multi-regional disease-specific patient meeting program with a million-dollar annual budget Organized multi-year community fundraising festival with over 1250 annual attendees as well as successful 5K events Directed marketing efforts to increase organization awareness and program attendance using social media networks and traditional promotion
	Nonprofit Organization Management Administer Medical and Therapy Equipment Grant program including budget management, equipment procurement and distribution Experienced project team leader for business planning, new programs, products and services Strategic plan implementation to strengthen nonprofit organization and increase its effectiveness Onsite supervise of large teams of volunteers for multiple events and programs