This year, as in the last few years, the Global Mitochondrial Disease Awareness Week was held, in the third week of September. The GMDAW is focussed on creating awareness, education, fundraising and advocacy efforts with respect to mitochondrial disease all around the world. In many countries national events were organised with this aim. This varied from walking- and biking tours to raise funds, to patient information days, and general information campaigns.

For 2017 IMP wanted to set the GMDAW globally on the map by beating the world record of lighting out the most monuments/landmarks ever. Of course in green light, the colour which represents the disease best. The Guinness World Record was held with 38 monuments. The goal for IMP was to light out 55 monuments for 24 hours worldwide in the night of the 16th of September. The number 55 was chosen because it was 55 years ago that the first mitochondrial diagnosis was set.

A special workforce within IMP, covering Australia, New Zealand, Europe, Canada and the United States, started the #lightupformito campaign. The idea was to have those lighted landmarks being photographed and posted on Facebook and Twitter, so that the campaign went viral.

It turned out to be a big success! The world record is set!

A total of 108 important landmarks in 11 different countries were lighted out in green. Mitochondrial disease was in the spotlights for once. Among the landmarks were wellknown monuments such as the Colosseum in Rome, the Sagrada Familia in Barcelona, the Niagara Waterfalls in Canada, and the Empire State Building in New York. And many, many more. The green light campaign triggered much attention on Facebook and Twitter and the green trend was copied with pictures of people in green T-shirts, gatherings in green light, green candles, etc. etc. Additionally, the campaign received attention in numerous national newspapers and in some cases on television. 

 

IMP wishes to thank all those who were involved in this fantastic campaign! 

 

The search for a cure for mitochondrial disorders is of the essence. Nobody will deny this.

However, we all know that scientific developments take time and the process of approval of drugs is a lengthy one. And even when a drug/cure is on the market, it is likely that not all mitochondrial patients will benefit from it. Mitochondrial disease concerns a group of complex, hetergenous disorders.

In the meantime mitochondrial patients have to live their daily lives. Therefore, the quality of life and the concurring carepaths require our full attention. It is for this reason that IMP initiated a full study into the quality of life of mitochondrial patients. If we know and understand the daily situation of patients and have analysed the most important complaints which affect the quality of life, we can stimulate the research into developing good carepaths with proper therapies. In the end we wish that patients can be in control of their daily lives and be empowered in such a way that they can manage their own situation.

To this end IMP has asked a renowned German health research institute to start a quality of life study in Germany. The study started a few years ago, aiming at adult (16+) patients with different types of mitochondrial disease. All adult patients with a confirmed diagnosis could participate. The study was funded by the German DGM, the patient organisation for muscular disease, and member of IMP. Approximately 100 patients took part. These patients were asked to complete questionnaires, which was an enormous job and took quite some time. IMP is really thankful to these patients!

The German study is now finished. The institute is working on the final analyses and wishes to officially publish the results. This will come soon and we will keep you informed.

The study is now having a follow-up with a full quality of life study in The Netherlands, at the Radboud UMC in Nijmegen. The study will hook up to the German one but will focus on different other aspects. This Dutch study will concentrate on the quality of life of 8-18 year olds, and aims at developing intervention tools so that patients can deal with the main complaints themselves. The study is called POWERME and started in September this year. It is funded by the Dutch Prinses Beatrix Spierfonds, which is an independent fund for research studies into muscular disease.

Both studies have drawn international interest. The researchers in Germany and The Netherlands are willing to share their methods and views with others. Interest has been shown from Canada and the USA.

 

 

In the world of mitochondrial medicine many topics are being discussed and many issues are to be resolved. If these are purely medical, it is obvious that they must be dealt with by the medical (and other) specialists. Yet, there are also issues which should be dealt with in a broader circle, with patient representatives, other scientists, regulatory authorities (EMA, FDA) or with representatives from pharmaceutical industry.

Therefore, IMP has taken the initiative to organise and (partly) fund international workshops to deal with different issues. Main goal is to have all relevant stakeholders together so that different subjects can be discussed, consensus can be achieved, and the path to a therapy/cure will be smoother.

Last year in November in Rome the first workshop took place. This was done with the great support of a select group of academic researchers. Key opinion leaders from the academic world, all involved in mitochondrial disease, and representatives from different patient advocacy groups met. The aim was to achieve consensus on a list of outcome measures for trials on primary mitochondrial myopathy. Consensus on this is essential for the process of having trials and drug development approved by FDA and EMA. This would speed up the whole process. And after a couple of days of hard work and additional work by four KOL'S a consensus list was achieved. The list will serve as guidance for researchers organising trials for primary mitochondrial myopathy.

The academic researchers are now planning another comparable workshop, focussing on another type of mitochondrial disease.

A second workshop took place in March this year in Amsterdam. This time also representatives from (7) pharmaceutical companies participated. The aim was to share knowledge and experiences with organising research studies and trials and with the FDA and EMA. All participants were open in sharing and eager to learn from each other. It is unique that within a disease community all stakeholders meet and discussions take place in such an open atmosphere. The added value of such workshops became clear and the need for more was expressed.

As it is in the interest of mitochondrial patients that such meetings take place with the aims of learning from each other, having in-depth discussions, achieving consensus, and as such speeding up the path to a cure. Therefore, IMP will continue with its efforts to organise these.

Last June the annual member meeting of IMP took place in Cologne. Coinciding with the Euromit2017 conference this was a fantastic opportunity to combine both.

For years Euromit has been a place to meet for researchers, clinicians, care professionals and patient representatives, all involved in mitochondrial disease. The medical programme was attended by dozens of young researchers who wish to specialize in mitochondrial disease. This makes us very hopeful for the future. As such the entire conference breathed optimism and positive energy.

During the IMP annual member meeting a new board had to be elected. All five sitting board members were re-elected for another period of 3 years and the board was reinforced with a sixth member: Philip E. Yeske, Ph.D, Science & Alliance Officer of the United Mitochondrial Disease Foundation (USA).

Additionally, the Scientific Committee of IMP which reviews applications from researchers for endorsement/support by IMP, was reinforced with a fourth member: Alison Maguire, BSc FCA, Head of Research of the Lily Foundation (UK).

Next year's annual member meeting will take place in Cambridge, UK, directly after the Mitochondrial Medicine Conference in May.

 

Each year, at the third week of September, the Global Mitochondrial Disease Awareness Week is held. The Global Mitochondrial Disease Awareness Week (GMDAW) is marked by awareness, education, fundraising and advocacy efforts to raise awareness about mitochondrial diseases (mito) all around the world. Many events are organised on a national level, but this 'light up' campaign is an international event.

This year the international mito community wants to set the Global Mitochondrial Disease Awareness Week globally on the map by beating the world record of lighting out the most monuments/landmarks ever. Of course in green light, the colour which represents the disease best. The current Guinness World Record for most monuments lighted out (24 hours) is held by Estee Lauder for Breast Cancer Awareness with 38 monuments. The goal for us is to light out 55 monuments for 24 hours worldwide on Saturday/Sunday September 16th-17th 2017. 55 monuments, because in 2017 it is 55 years ago that the first mitochondrial diagnosis was set.

The Guinness World Record organisation has officially recognised the attempt to break the record. And there is a big chance that we are going to make it! There still are many things to organise and communicate but we are getting there.

Watch the world turn green on the 16th of September!

 

 

Questions?

Maureen Latocki (Canada) This email address is being protected from spambots. You need JavaScript enabled to view it.

Rebecca Davis (Australia) This email address is being protected from spambots. You need JavaScript enabled to view it.

Alfons Heetjans (Netherlands) This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Are you interested in the latest scientific developments and research studies regarding mitochondrial disorders? If so, the patient meeting at the international medical congress, Euromit2017, is the place to be. The programme, especially developed for patients and their families, is taking place on Wednesday the 14th and Thursday the 15th of June (two half days), in Cologne, Germany. Presentations are given by leading researchers specialised in mitochondrial disease from all over the world. The programme also offers a great opportunity for patients to ask questions to these specialists. The main language is English but the presentations will also be translated simultaneously in German (headphones). And last but not least the patient meeting is an excellent event to meet other mitochondrial patients.

Each year, at the third week of September, the Global Mitochondrial Disease Awareness Week is held. The Global Mitochondrial Disease Awareness Week (GMDAW) is marked by awareness, education, fundraising and advocacy efforts to raise awareness about mitochondrial diseases (mito) all around the world.

This year we want to set the Global Mitochondrial Disease Awareness Week globally on the map by beating the world record of lighting out the most monuments/landmarks ever. Of course in green light, the colour which represents the disease best. The current Guinness World Record for most monuments lighted out (24 hours) is held by Estee Lauder for Breast Cancer Awareness with 38 monuments. The goal for us is to light out 55 monuments for 24 hours worldwide on Saturday/Sunday September 16th-17th 2017. 55 monuments, because in 2017 it’s 55 years ago that the first Mitochondrial diagnosis was set.

Available online, the official Rare Disease Day poster, is out now! Based on the theme of RESEARCH, the poster embraces the possibilities that research can bring, a bright and hopeful future. The visual also emphasizes the important role that everyone has to play in furthering rare disease research. Let's raise more awareness of rare diseases than ever before, by sharing the poster on all the social media channels and websites that we can!

For the whole information package on Rare Disease Day you can go to http://www.rarediseaseday.org/downloads

Last December our friends from MEET organised their final and closing congress on mitochondrial disease in London. After a campaign of almost 4 years the Mitochondrial European Educational Training Project is ending in January 2017. In that period 11 PhD students and 3 post doc students were trained in the mitochondrial disease field, in 9 research centres throughout Europe. Hopefully they all stay committed to the mitochondrial research field. It is inspirational to see how a new generation of researchers grew to be involved in mitochondrial disease! 

IMP was invited to the congress as the energetic MEET’ers also raised funds for IMP with a crowd funding campaign and by participating in many sportive events around Europe. On this website we have been reporting about these.

 

THE COUNTDOWN HAS BEGUN! With only 100 days left until the tenth edition of Rare Disease Day on Tuesday 28 February, rare disease patients and organisations around the world have already started preparing their Rare Disease Day activities and events.

Get involved in Rare Disease Day 2017:

Become a friend of Rare Disease Day – everyone (companies, patients, researchers, healthcare providers and academics alike) can become a friend of Rare Disease Day!

Raise and join hands to show your solidarity with rare disease patients around the world.

Tell your rare disease story on Rarediseaseday.org.

Download the Rare Disease Day logo* to use on your website or at your events and keep an eye on Rarediseaseday.org for the launch of the Rare Disease Day 2017 poster and video!

Hold an event - every year thousands of events take place at hospitals, patient organisations and research institutions across the world. Raise awareness by holding an event with fellow patients, policy makers, researchers or health care practitioners. If you are a patient or from a patient organisation you can post your event on Rarediseaseday.org. You can also see other events taking place.

 

EURORDIS brings together the patient community and the 39 national rare disease alliances that are partners of Rare Disease Day. Since the launch of Rare Disease Day, thousands of events have taken place around the world. The Rare Disease Day campaign started as a European event and has progressively become a worldwide phenomenon, with participation in over 80 countries around the world in 2016.

© 2017 Int. Mito Patients