Influential Women Highlights Michele Levoir Sloan: Nonprofit Leader Driving Impact in Rare Disease Advocacy
Rockville, Maryland – Michele Levoir Sloan is a dedicated nonprofit leader and seasoned, now retired executive with over 25 years of experience in affordable housing finance. Throughout her distinguished career, she built and advanced multifamily and affordable housing projects nationwide, specializing in Fannie Mae, Freddie Mac, and HUD programs, public-private financing structures, and housing policy incentives. Her work helped expand access to safe, affordable housing while shaping innovative financing strategies across the United States.
Recently retired from this role, Michele has leveraged her leadership expertise and advocacy experience to make a profound impact in the rare disease community, where she is now focusing her career entirely. She is the Co-Founder of the Foundation to Fight H-ABC/TUBB4A, a nonprofit organized in 2015 dedicated to advancing research, treatment, and awareness for children affected by this devastating genetic disorder, in addition to supporting patients and families as a patient advocate.
H-ABC (Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum) is a rare and progressive neurological disorder caused by mutations in the TUBB4A gene. With no known cure, the condition typically begins in infancy or early childhood and severely impacts the brain’s ability to form myelin, the protective sheath surrounding nerve cells, leading to progressive neurological decline.
Michele’s journey into rare disease advocacy began in 2014, when her daughter, Elouise, was diagnosed with H-ABC. Faced with a lack of treatment options and limited awareness, Michele transformed her personal adversity into action by establishing the Foundation to Fight H-ABC. The organization was created to support affected families, accelerate research, and push forward the search for effective treatments and ultimately a cure.
Under her leadership, the foundation has built meaningful partnerships with leading research institutions, including the Children’s Hospital of Philadelphia, Yale University, and the University of Massachusetts. It has also funded the initial rollout of a natural history study at the Children’s Hospital of Philadelphia and developed a patient registry designed to support future clinical trials. The foundation has recruited and completed a drug repurposing study to help identify existing drugs and compounds that could help alleviate symptoms. All of these initiatives have helped lay critical groundwork for advancing scientific understanding and therapeutic development for H-ABC and related TUBB4A leukodystrophies.
Beyond research efforts, Michele has played a pivotal role in policy and regulatory engagement. She has actively participated in meetings with the U.S. Food and Drug Administration (FDA) and congressional stakeholders, ensuring that the voices of patients and families are represented in critical decision-making processes. Her advocacy continues to elevate awareness and accelerate pathways for rare disease innovation. She also serves as a volunteer member of the Maryland Beneficiary Advisory Council to help shape the impact of the state’s Medicaid program for families. Lastly, she provides consulting services via her recently created consulting company, ECS Consulting LLC.
Michele attributes her success to discipline, persistence, and a results-driven mindset. She believes that meaningful achievements come from hard work, consistent follow-through, and the ability to turn vision into tangible outcomes. This philosophy has guided her throughout her career, whether structuring complex housing finance transactions or advancing global advocacy efforts for rare disease treatment development.
When reflecting on the best career advice she has received, Michele emphasizes the importance of working hard, staying focused and committed, and leading by example. She also underscores the value of embracing mistakes as essential learning opportunities that foster long-term growth, resilience, and professional development.
For young women entering her field, Michele encourages pursuing work that is genuinely meaningful rather than solely financially driven. She believes that passion is what sustains individuals through challenges and setbacks, and that lasting impact is achieved through consistent engagement, even when outcomes are uncertain. She also advises focusing on results rather than recognition, allowing the quality and consistency of one’s work to speak for itself.
Michele identifies the biggest challenges in her work as navigating the inordinate challenges, obstacles, and financial hurdles needed to drive towards a cure. In the rare disease space, she highlights rapid advancements in FDA flexibility and the emergence of individualized therapies as transformative opportunities that are reshaping the future of treatment and care.
In both her professional and personal life, Michele is guided by the values of service, integrity, resilience, and impact. She is deeply motivated by helping others, especially families facing overwhelming challenges, and believes that meaningful work should always serve a greater purpose beyond personal recognition.
Michele Levoir Sloan is recognized not only for her decades of professional achievement but also for her ability to transform personal adversity into meaningful global impact—supporting families affected by H-ABC while driving progress in policy and development.
“Together, we can give every child living with H-ABC and other TUBB4A-related leukodystrophies a fighting chance—and let families like Elouise’s know they’re not alone.”
Learn More about Michele Levoir Sloan:
Through her Influential Women profile, https://influentialwomen.com/connect/michele-sloan, or through her profile on the Foundation to Fight H-ABC/TUBB4A, https://www.h-abc.org/board-advisors
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