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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, 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.

 

Phil YeskeDr Philip Yeske was re-elected to the Board for his second term. Phil is the Science & Alliance Officer at UMDF in the USA, and has been elected as Treasurer of IMP. We are immensely grateful for all he has already done for IMP and are delighted that he will continue to sit on the Board.

Phil commented, “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 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.

 

Paula MorandiPaula 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.

 

 

Piero SantantionioEmma DelreyAlfons Heetjans

Thank you to our outgoing Board 

IMP would like to thank the outgoing Board for their invaluable contributions. Piero Santantionio from Mitocon, Emma Delrey from AMMi and Alfons Heetjans from the Netherlands (pictured left to right). Their skills and experience have contributed significantly to the growth of IMP over the last 3 years. Thank you.

 

 

Farewell to our Founder

Elja van der VeerThe Annual Meeting marked a significant milestone for IMP, as Elja van der Veer retired. Elja founded IMP a decade ago and has built and guided the organisation with such passion.

Alison Maguire said, “On behalf of the IMP members past and present, we would like to say a huge thank you to Elja. Thank you not only for all the selfless hours you have worked/ put into the IMP but for having the vision and the passion to build it. We are a small rare disease community which is made so much stronger when we work together. You have created fantastic foundations that we as a team will build on and hope to make you proud. Thank you from us all here and from all of the mito community world wide.”

 

Please watch Elja's farewell video.

 

© 2021 Int. Mito Patients