ABOUT
IMP

Paula Morandi - Chair. Paula is the Patients Representative for Mitochondrial Eye Diseases with Mitocon in Italy. Paula said, "I am truly honoured to have been appointed Board Member for IMP. I am a mitochondrial disease affected person with a serious visual disability and I have never lost hope for a cure. I have been trying to be of support to other patients who have lost their vision due to a mitochondrial disease and to project my passion for life.”

For more than a decade, Paula has gained experience through Mitocon and has obtained a number of certifications from the Eurordis Academy, including becoming a Patient Expert, completing courses on translational research, leadership in rare diseases and social media. Paula is involved with the LHON Patients Pathways in Italy and she spearheaded the inaugural LHON Awareness Day with IMP in September 2020.

Pedro Mendes Ferreira Neto – Treasurer. Pedro is the President and co-founder of MITOCON Brasil, the Brazilian Association of Mitochondrial Genetics and Mitochondrial Diseases. He was struck down by Leber's Hereditary Optic Neuropathy (LHON) in 2019. Like many patients, he had a long journey to reach his diagnosis, but this journey provided him with experiences which lead him engage in the cause, exercising social activism and advocacy work with important results in Brazil. He has been instrumental in the creation of laws and public policies that aim to bring improvements to the quality of life of people with mito in the country.

Pedro is a lawyer and has been a public employee in the Brazilian Legislative Branch for 12 years. "I am passionate about equity, dignity, respect and the inclusion of all people in society. And I am committed to helping IMP grow even stronger and be able to help more people around the world."

Toni Catton – Secretary. As the General Manager of the Mito Foundation, Toni steers key strategic projects, supports the team in day to day operations and fulfils the Human Resources and Risk Officer requirements. Toni has over 20 years of experience in Human Resources in a large corporate environment and brings a strong focus on effective ways of working, project management, enabling technology and team wellbeing.

Toni’s passion for the mito cause developed when her daughter was diagnosed with mito in 2016. It is through this unique lens that Toni strives to ensure families are supported, and the pathway to a cure is advancing.

Emma Del-Rey supports her daughter who has mito. Emma has been the President of AMMI, a French mitochondrial disease organisation since 2008.
She arranges meetings for regional and national delegates, provides information to hospitals and families, and organises events to raise funds for projects, as well as helping affected families directly.

Emma has been involved in IMP since it's inception and has been an invaluable member of the board since 2011. She proudly represents IMP and the global mito community in a number of international projects, including Genomit and E+.

Kira Mann is the CEO of MitoAction in the USA, and brings over 25 years of rare disease advocacy experience to IMP. From organisation administration, patient and community education, legislative advocacy, research and therapy development, and supporting patients on their day-to-day journeys, Kira is committed to supporting the patient community and working collaboratively with industry partners and patient advocacy organisations across the globe to ensure that our community’s needs are met.

Kira acted as Chair of the IMP Board for a number of years, stepping down in July 2025. Her passion for collaboration and her dedication to the international mito community helped her steer IMP into an exciting new phase.

Liz Curtis is the CEO and Founder of The Lily Foundation in the UK. She established the organisation in memory of her daughter Lily, who sadly passed away from mitochondrial disease at just eight months old. Since then, Liz has become a driving force for change, transforming personal tragedy into national impact.

Under her leadership, The Lily Foundation has grown into a powerful advocate for patients and families, funding pioneering research, providing essential support services, and influencing policy and public awareness. Liz played a pivotal role in the successful campaign to legalise mitochondrial donation in the UK, a breakthrough that has given hope to countless families. Her personal commitment, compassion and determination continue to shape the landscape of mitochondrial disease advocacy, both in the UK and internationally, through her work with IMP and beyond.

Kristen Clifford is the United Mitochondrial Disease Foundation’s (UMDF) President and CEO. Kristen arrived at UMDF in January 2025 with several decades of experience in non-profit and healthcare environments, including considerable time focused on improving the accessibility and quality of care for patients impacted by severe disease.

Prior to joining UMDF, Kristen served as Chief Program Officer at the Alzheimer’s Association. Before this, she held multiple high-profile roles within the National MS Society including Vice President of Healthcare Access and Vice President of Healthcare Provider Engagement and Clinical Activities.

Elja van der Veer With a management background in industry and with many years of volunteer work for Spierziekten Nederland (Netherlands), Elja took the initiative in 2009 to approach other patient organisations involved in mito to see if they could join forces. Her motivation was clear: Elja lost her brother to mitochondrial disease, she then became symptomatic herself and later her daughter was diagnosed with mito too. Elja turned her sadness into the energy to fight for a stronger voice for the mitochondrial patient. “The world must know about this horrific disease.” With the idea of connecting and joining forces and advocating for care and cure, IMP was founded in 2011.

Although Elja retired from leading the organisation she was honoured to have been asked to support IMP on the Board. Elja’s sincere hope for the future is that patients may count on either a cure or the best of care, wherever in the world.