ABOUT
IMP
Who is IMP?
International Mito Patients (IMP) is a network of national patient organisations involved in mito. The national patient organisations support and advocate for patients, fund research, increase awareness and improve education in their country.
By joining forces, IMP represents a large group of patients, creating a stronger voice on an international level.
IMP is a member of the European Organisation for Rare Diseases (EURORDIS), which has international partners such as the National Organisation for Rare Diseases (NORD) and Canadian Organization for Rare Diseases (CORD).
10 years, thousands of people
2021 marked the 10 year anniversary since IMP was established. In that time, IMP has brought together patient organisations from around the world, and facilitated international discussions about mitochondrial diseases (mito). It has supported thousands of patients and their families, and has built a global mito community.
Relationships with other stakeholders, including clinicians, researchers, scientists and industry, continue to strengthen.
New board
for IMP
Following the election during the Annual Meeting on 10 June 2021, IMP is delighted to welcome a new Board.
Kira Mann – Chair. Kira, who is 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.
Toni 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 Maguire - Treasurer. Alison has been involved with IMP since 2016 initially as a member of the Scientific Committee and then as a General Board Member. Alison has an academic background in science and a professional qualification in finance.
“In 2009 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 & finance backgrounds to ensure the best research was being done into these devastating conditions was what was important to me - I have never looked back”, stated Alison.
For nearly 2 decades, Alison has gained extensive experience in mito, initially as a carer for her affected child, then through her role as trustee and then Head of Research & Finance for The Lily Foundation. Alison is an active member on a number of global committees, ERN's, and expert patient panels for academia and industry.
Clare Chatfield is the Operations and Marketing Director for The Lily Foundation. Clare has been working with the UK mito community for the past 12 years. At the Lily Foundation, Clare works with an amazing team and together they are responsible for all fundraising efforts, events, marketing and digital comms as well as working to streamline processes through affective operations.
Clare says: "I am very proud to represent The Lily Foundation and the UK mito community as a member of the IMP board and working towards a united global approach to fighting mito, funding research and providing support for people with mitochondrial disease."
Team
Jo de Bry – Director of Development and Operations:
Jo has worked with the mito community for over 13 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.