The United Leukodystrophy Foundation Welcomes New Executive Director

DeKalb, IL – The United Leukodystrophy Foundation (ULF) is pleased to announce the appointment of Diane Fennimore as its new Executive Director. Fennimore is a seasoned business development executive with more than twenty years of leadership experience in mission-driven organizations. She has a deep understanding of the strategies and partnerships that are critical to the success of advocacy initiatives, education, program development, research, and patient and family services. In September 2023, Fennimore will take the helm to support the ULF’s work toward providing support to the leukodystrophy community, improving patient quality of life, and finding cures. 

“I am honored to join the United Leukodystrophy Foundation as the new Executive Director,” shared Fennimore. “I am excited to collaborate with our Board and staff to drive positive change and make a difference in the lives of patients and their families. I am looking forward to partnering with other leukodystrophy Patient Advocacy Groups, advancing relationships within the medical and research community, and contributing to the continued success and growth of the ULF.” 

Fennimore has demonstrated her passion for supporting women and children, and for elevating underrepresented and underserved people through developing creative collaborations with organizations that have similar priorities. Fennimore began her nonprofit career as the Senior Director of Corporate Development for the American Cancer Society. She set the strategic direction and led the execution of the Corporate Development program throughout New Jersey and recruited New Jersey’s leading CEOs into a unique, multi-year partnership program. 

Fennimore then served as President and CEO of Community Health Charities of New York (CHC-NY) where she reported to the Board of Directors and managed the operations, administration, and fundraising of CHC-NY, a membership organization of 165 health non-profits that delivered patient and family services throughout the state. In her role as the Vice President of Development at the Alliance for a Healthier Generation, Fennimore led the national diversified fundraising strategy that enabled the organization to deliver education and resources to schools and families nationwide to promote health, well-being, and academic success. 

In her most recent role as the Development Executive at Women Corporate Directors Foundation, Fennimore promoted the advancement of gender diversity and women of color on Boards through creating collaborations with corporations. 

Fennimore is a graduate of Fairleigh Dickinson University with an MBA in Marketing and holds a BS in Business Administration from Caldwell University, both located in New Jersey. 

Ron Chapleau, President of the ULF Board of Directors, shared his enthusiasm for the new addition to the team: “I am delighted on behalf of our Board and the entire United Leukodystrophy Foundation family to welcome Diane Fennimore to our community as our new Executive Director. It was immediately apparent that Diane possesses a rare combination of drive, intellect, and business acumen; coupled with a generous helping of empathy and compassion that are essential to running a rare disease charity. Diane’s long and successful history of leading other organizations assures a bright future for the ULF and the community we serve.” 

The ULF eagerly anticipates the unfolding of this new era of working together for positive outcomes in the leukodystrophy community. 
For more information, please visit or email or (800) 728-5483.

About The United Leukodystrophy Foundation The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois. 

The ULF mission is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures. 

The ULF vision is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, the ULF provides support, networking, and education to help navigate the journey of the disease. 

Contact: or (800) 728-5483
Date: September 8, 2023