The Importance of Technology for LHON Patients

Sunday 19 September 2021, 17:00-19:00 CET

Join the international LHON community for a free Facebook Live event.

Visit IMP's Facebook page to join the event.

Technology can make an immeasurable difference to someone with LHON. It can enable vision impaired people to maintain independence, perform in jobs that otherwise would be inaccessible to them, excel in education, participate in social activities, and accomplish everyday tasks.

But keeping up with new technology can be challenging and time consuming. Michele Landolfo is an expert on the use of technology by vision impaired people.  He will share key information about how technology can improve the quality of lives of people with LHON.

Michele will be joined by members of the LHON community from around the world who will discuss the impact of technology on their lives. They will share the successes they have had with different technologies.

Want to know if there is an App that will assist you with a particular activity? Interested in how technology can assist in an education or work setting? Is there an App that will help you get from place to place more easily? Post your questions in the chat box during the event and we will answer as many as we can. 

The event will be in English. 

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About Michele Landolfo

LHON Awareness Day is part of World Mitochondrial Disease Week.

LHON Awareness Day is hosted by IMP. Thank you to the members of the LHON EU group who initiated the establishment of LHON Awareness Day in 2020.

10 years in review

 Over the last 10 years IMP’s reach has grown around the world. Here are just a few highlights!  

 We are proud to:

•  Have 16 incredible patient organisations as members.
•  Have nurtured strong international networks with stakeholders from the medical world, researchers, industry, EMA/FDA, Eurordis and ERN’s.
•  Collaborate with international consortium, Genomit, on the development of the first non-clinical global mitochondrial disease patient registry.
•  Participate in the Leigh’s Syndrome, CureMILS, project.
•  Facilitate the review and publication of the list of medicines to be used with caution by mito patients.
•  Host World Mitochondrial Disease Week, including Light Up for Mito and LHON Awareness Day, with support from our member, the Mito Foundation.
•  Have facilitated a successful study into chronic pain in mitochondrial diseases.
•  Have developed guidelines to bring issue of chronic pain to clinical settings.
•  Have participated in the study PowerMe, a blended cognitive therapy to cope with fatigue and pain for 8-18 year olds.
•  Provide international support services for any patient anywhere in the world, in collaboration with our members: MitoAction and the Mito Foundation.
•  Organise, facilitate and sponsor workshops on various issues.
•  Participate in workshops organised by groups such as ENMC and Mitochondrial Expertise Centres.
•  Manage international Facebook communities, with support from our member, UMDF.
•  Provide information and news on our website, social media and through our network to the global mitochondrial disease community.
•  Have raised awareness about mito and IMP through presentations to national and international audiences.

We are grateful to our Founder, Elja van der Veer, who was the driving force behind IMP for 10 years. Elja retired in June 2021. 

IMP is run for, and by, our members and we are sincerely grateful for the many ways they support us.

Save the date for Mitocon’s annual meeting, the Mitochondrial Diseases Conference 2021.

15-16 October 2021

The conference will be held in English and will be a virtual event enabling more people to access the thought-proving and inspirational presentations.

It will bring together physicians, researchers and patients from around the world, providing a unique opportunity to discuss the latest research in mitochondrial diseases and the current understanding around potential pathways towards diagnosis and treatment.

 Useful links:

https://www.mitocon.it/mitochondrial-diseases-conference-2021/

https://www.facebook.com/Mitocon/photos/a.350477704989775/4120520327985475/

https://www.linkedin.com/feed/update/urn:li:activity:6818108804299821056

As she retires, IMP's Founder Elja van der Veer, looks back over the last 10 years...

"Musing about 10 years of IMP I would like to take you back to the very beginning, the origin.

Years ago my younger brother Erik (pictured left) died of mitochondrial disease. His death was the reason for me to join the small mito-subgroup of the Dutch Muscular Disease Association (Spierziekten Nederland). In the process of Erik’s disease our family did not have proper, solid information about the disease and about research developments (possible drugs or therapies) taking place. I wanted to improve that.

In the years that followed I myself was diagnosed with mitochondrial disease. And in 2010 our daughter Renske (pictured right and on the home page) became ill and turned out to be affected by mitochondrial disease too. She was 15 at the time.

All the sadness, pain and anger that I felt turned into upsetting amazement. Some questions kept coming back in my head: ‘Why doesn’t the world know about this horrific disease? Why doesn’t anybody do something
about this?’

Of course, there were other people in the world involved in mitochondrial disease, groups of patients and their families fighting against the disease and advocating for patients. And researchers and clinicians working on mitochondrial medicine.

But somehow we were not connected. We did not even know what was happening in our neighbouring countries.

Spierziekten Nederland gave me carte blanche to start and try organise an international network for mitochondrial patients. Researchers, clinicians and industry were all already working together on a global scale, so why not patients? We needed an international organisation to represent mitochondrial patients at a worldwide and professional level.

And if there is an international network we can just as well learn from each other, inspire each other and share our knowledge and insights.

So I started approaching the mito ‘colleagues’ in the neighbouring countries: Belgium, Germany, France and the UK. And the response was similar from everywhere: yes, of course we should join forces!

We met a couple of times informally, and were soon joined by representatives from patient organisations from Spain, Italy and the USA. In 2011 IMP was officially founded, by nine founding member organisations (right), already representing thousands of mitochondrial patients.

Now, 10 years later, we can look back at many successes. Mostly with very few resources and sometimes overcoming our own cultural and character differences. But it is a long list and I am very proud of this.

I will not exhaust you with all our achievements on the list but I do want to mention the fact that by now all the stakeholders in the mito community know who IMP is, what we do and where they can find us. This fantastic international network makes it easy for IMP to initiate studies, participate in research projects, work together on different issues, gather relevant information, educate about the burden of the disease in everyday life and call upon specialists to support individual patients wherever they live.

My personal story, my sadness, sorrow and pain, turned into something worthwhile and powerful. Isn’t that how many patient advocacy groups start?  I feel so lucky to have had the opportunity to meet so many inspiring people. With some I have worked together since the beginning in 2011! We all contributed to a solid and strong organisation.

The story of IMP always makes me think of a famous Irish saying. Let me end with it:

From tiny acorns grow mighty trees."

 Farewell to our Founder 

Thank you Elja, for the dedication and passion you have shown over the years. Your relentless advocacy for mito patients has changed the lives of many families around the world. Thank you for your kindness, generosity and inspirational vision for a world where national patient organisations collaborate to improve the lives of all mito patients.

Watch Elja speak about her work with IMP over the last decade as she steps down as Chair of the Board.
 

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, 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.

Dr 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 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 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.

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

The 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.