Font size

Kira Mann

Chair: Kira Mann
Position: CEO, MitoAction - USA

As the leader of a national patient advocacy organisation for mitochondrial disease, I bring over 25 years of rare disease advocacy experience.  From organisation administration, patient and community education, legislative advocacy, research and therapy development, and supporting patients on their day-to-day journeys, I am 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.

Philip Yeske (USA)

Treasurer: Dr Philip Yeske 
Position: Science & Alliance Officer at UMDF - USA

It has been my honour to serve on the Board of the IMP since 2017 and to witness significant growth in the organisation. As a federation of patient groups all focused on mitochondrial disease, our disease community benefits from the strength of bringing together a wide variety of voices. I cherish the connections and relationships that have been made through IMP and I am proud of the accomplishments of the organisation. With diverse membership on many levels- cultural, organisation size, mission, etc. – it is critical that IMP continue to evolve and adapt to meet the needs of the global mitochondrial disease patient community.

 

Alison MaguireSecretary: Alison Maguire
Position: Head of Research and Finance at The Lily Foundation - UK

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. I have been involved with IMP for a number of years as a member of the Scientific Committee. I am also the Lily Foundation’s representative on the Work Package 2 Group managing the creation of the Global Mitochondrial Disease Patient Registry.

 

Paula MorandiGeneral Member: Paula Morandi
Position:
Patients Representative for Mitochondrial Eye Diseases, Mitocon - Italy

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.  In the last twelve years I have gained lots of experience through Mitocon and I have obtained various certificates from the Eurordis Academy, with the Summer School to become a Patient Expert, the Winter School on translational Research, the Leadership School in Rare Diseases and the social Media Digital School. I am involved with the LHON Patients Pathways in Italy and I spearheaded the inaugural LHON Awareness Day with IMP in September 2020.  

 

 
 

© 2021 Int. Mito Patients