BACKGROUND

The Foundation is the only patient advocacy organization serving people living with scleroderma in the United States. Supported by a network of 13 chapters across the country, the Foundation is a relentless force in finding a cure and improving the lives of people affected by scleroderma.

Chief Executive Officer July 2021 - Present   

Responsible for the stewardship of the Foundation's strategic plan and supporting resources, including governance, administration, and fiscal oversight.  Lead efforts and programs to advance the mission in service of people affected by scleroderma.  

• Lead efforts to advance the mission through programs, scenario planning, and stakeholder engagement, resulting in 21% increase in community membership 
• Build partnerships in the scleroderma, rare disease, and autoimmune communities
• Foster a culture of philanthropy that supports the expansion of the Foundation’s investment in its mission priorities
• Built programming for corporate philanthropy and individual major giving, resulting in 53% revenue growth 
• Lead strategic planning to maximize organizational effectiveness and efficiency
• Serve as advocate and spokesperson on behalf of people living with scleroderma in the US with global stakeholders, including NIH, FDA, CDC and members of Congress 
• Oversee and implement resources to ensure that the operations of the Foundation are effective and efficient, including rebranding and realignment of chapter structure 
• Create an organizational culture that attracts and retains committed, caring, knowledgeable and highly competent staff and volunteers

The Foundation is the largest private funding source of rheumatology research and training programs in the United States. $70 Million+ in net assets, an annual budget of $15 Million, and a staff of 20+. Received coveted four-star rating from Charity Navigator for eleven consecutive years.

Executive Director June 2014 - 2021  

Responsible for the overall management of the Foundation, including governance, administration, and fiscal oversight. 

• Work closely with the Foundation Board and Executive Committee to fulfill the Foundation’s mission to advance research and training to improve the health of people with rheumatic diseases.
• Engage Foundation volunteer leadership in the formulation of strategic goals and long-range planning
• Provide leadership and expertise related to fundraising, program development, financial stewardship, and governance.
• Oversee fundraising activities, including the $75 Million Leading Boldly campaign.
• Champion efforts to promote interest and participation in Foundation programs and communicate ROI
• Represent the Foundation among internal and external stakeholders, including the NIH and other national organizations and funding agencies

The ACR represents over 9,000 rheumatologists and rheumatology

health professionals around the world and has a staff of 100+ and an

annual budget of more than $20 Million. The ACR provides programs of

education, research, advocacy, and practice support for its members.

Senior Director, Research and Training 2010 – 2014

Responsible for the management of the College and Foundation’s

research and training programs, including educational conferences,

scholarships and grants

• Direct responsibility for annual budget of $14 Million

• Grew programs by 87% and increased revenue 132%

• Implemented standard operating procedures representing cost

savings of 32% for my department

• Negotiated contracts and memorandums of understanding

with external partners

• Managed the Blue Ribbon Panel review of the state of

academic rheumatology in the US, resulting in a white paper

Director, Foundation Awards and Grants 2008 – 2009

Responsible for the development, implementation, peer-review, and

evaluation of awards and grants programs

• Oversaw $10 million+ annual awards and grants budget

• Administered and evaluated $30 million Within Our Reach

research program focused on rheumatoid arthritis

• Completed first-ever portfolio review, resulting in complete

re-design of program

Internationally renowned research university and academic health

center, employing more than 18,000 faculty and staff.

Program Manager, School of Public Health (Health Behavior) 2005- 2007

Responsible for the overall administration of 2 NIH research grants,

including tracking enrollment, ensuring data integrity, and managing

program staff

• Managed and reconciled grant budgets totaling $2.5 Million

• Maintained compliance with NIH and IRB policies

• Assisted in development of study protocols, grant writing and

submission

Research Specialist, Department of Psychology 2004-05

Responsible for assisting with NIH funded studies regarding mobility in

chronic stroke patients

• Initiated movement “shaping” tasks with study participants in a

rehabilitation setting

• Researched and collected data on newly developed theories

• Assisted with preparation of manuscripts submitted to major

scientific journals

Berman, J.R., O'Rourke, K.S., Kolasinski, S.L., Aizer, J., Wheatley, M.,

Battistone, M.J., Siaton, B.C., Criscione-Schreiber, L., Pillinger, M.H.,

Lazaro, D.M. The Rheumatology Research Foundation Clinician Scholar

Educator Award: Fifteen Years Promoting Rheumatology Educators

and Education. Arthritis Care & Research, 2016.

Wheatley, M., Echard, S. Meaningful Mentorship: The Pyramid Model.

Session presented at the 2011 ASAE Annual Meeting & Expo, St. Louis,

MO, August 2011.

Tucker, J., Roth, D., Vignolo, M., Westfall, A. A behavioral economic

reward index predicts drinking resolutions: Moderation re-visited and

compared with other outcomes. Journal of Consulting and Clinical

Psychology, 2009; 77(2): 219-28.

Vignolo, M, Reynolds, NC, Lanier, J, Simpson, CA, Roth, DL, & Tucker, JA.

Delay discounting in problem drinkers with natural resolutions. Poster

presented at the American Psychological Association 116th Annual

Convention, Boston, MA, August 2008.

Uswatte, G., Taub, E., Morris D.M. & Vignolo M. Reliability and validity of

the 14-item Motor Activity Log for measuring real-world arm use. Stroke,

2005; 36: 2493-2496.