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New Board for IMP 

Following the election during the Annual Meeting on 10 June 2021, IMP is delighted to welcome a new Board.

 
Kira MannKira Mann - Chair. 
CEO of MitoAction in the USA, is the new Chair of the Board. Kira 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. 

“Having played a progressively more involved role with IMP over the past few years, I am confident in taking the next steps to expand my leadership within this great organisation. It is my honour to serve as Chair of IMP and to ensure that the work of this organisation continues to expand in pursuit of its goals and objectives to serve the mitochondrial disease community,” commented Kira.

 

Team - Mito FoundationToni Catton - Secretary. As 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 has a daughter who was diagnosed with Mitochondrial Disease. Since 2008, she is the President of AMMI, a French Mitochondrial Disease Organisation.

She organises meetings for the regional delegate and national, provides information to hospitals and families, and organises events to raise funds for scientific projects and help affected families.

She is a member of International Mito Patients (IMP), part of the board since 2011, and is in charge of international project for mitochondrial patients.

 


Paula Morandi
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.

 


Alison MaguireAlison Maguire is the Head of Research and Finance at The Lily Foundation in the UK. She has been involved with IMP for a number of years as a member of the Scientific Committee. Alison is also the Lily Foundation’s representative on the Work Package 2 Group managing the creation of the Global Mitochondrial Disease Patient Registry. 

“I became involved with The Lily Foundation in 2009 after I lost my 4 year old daughter Niamh to mitochondrial disease.  This tragedy changed my life and career direction. I decided that supporting other families and using my medical background to ensure the best research was being done into these devastating conditions was what was important to me”, stated Alison.

 

Team

Jo de Bry

Jo de Bry - Director of Development and Operations: 

Jo has worked with the mito community for over 10 years. She spent 8 years as the Marketing and Communications Manager at the Mito Foundation in Sydney, before moving to the UK where she worked for The Lily Foundation and then IMP. 

Jo is passionate about improving the lives of people affected by mito and is committed to supporting the global community.

 

 
 

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