Mitocon, the Italian organisation for mitochondrial patients and member of IMP, is pleased to announce the 10th National Meeting on Mitochondrial Diseases, on October 9-10, 2020. Owing to the ongoing situation with Covid-19, it will be organised as a virtual conference, in English. 

The meeting will bring together doctors, researchers and patients and will be a unique opportunity to discuss and update on current understandings of mitochondrial diseases and pathways towards diagnosis and treatment.

Mitochondrial diseases are very complex disorders little known by the scientific community itself until a few years ago. In recent years, giant steps have been taken in the study of the basic mechanisms involved in these diseases and we have finally moved from the diagnosis to the study of possible treatments.

Since its first edition in 2011, the annual Italian Meeting on Mitochondrial Diseases has contributed to this process by gathering the entire community of Italian doctors and researchers around the association of patients and helping to strengthen international partnerships and collaborations, making the whole community grow together and contributing to sharing knowledge and research progress.

The program, drawn up in collaboration with Mitocon’s Scientific Committee, has been designed to inspire the integration of technology and innovation into medical practice. In addition to the natural history of diseases and pre-clinical models, we will talk about the ”high tech” involvement in mitochondrial medicine, robotics and gene therapy.

A very important session will be dedicated to the research of therapies, with a specific focus on an update on current clinical trials. It will be a unique opportunity for discussion between clinicians and industry and a real possibility for new collaborations.

 This 10th edition of the meeting is dedicated to one of the fathers of mitochondrial medicine, Prof. Salvatore Di Mauro, for decades leading one of the first and main research groups on mitochondria at Columbia University in NY (US), which has attracted and built entire generations of mitochondriologists in Italy and worldwide. A special lecture will be dedicated to him for his 80 years.

The meeting will be in English to facilitate participation of doctors and researchers from all over the world, promoting international exchange and collaboration, crucial to fight together against mitochondrial diseases.

Please click here to see the programme: https://www.mitocon.it/10th-italian-meeting-on-mitochondrial-diseases/

 

 

September 2020

The World Mitochondrial Disease Awareness Week which took place from 13-19 September showed some fantastic results. In the Light-Up-for-Mito campaign 173 monuments were asking attention for mito while being lit in green; 173 landmarks throughout the world!

More than 40 events and special activities were registered in the awareness week and probably more than that took place. Different events of informational, educational and fundraising nature. For those who want to know the specifics: https://mitochondrialdiseaseweek.org/events/

One very special event was the Awareness Event on Facebook for LHON patients and their families. This is still available on the IMP Facebook page.

The Australian Mito Foundation organised a Symposium: "Gene Therapies and the Promise for Mitochondrial Disease"  with presentations which attracted interest throughout the world. The presentations can be found on https://www.mito.org.au/mito-foundation-symposium/

Everything was promoted and shared online, specifically through social media. With many thanks to the mito community which is so active, despite the difficult circumstances in the world this year.

We understood that some of the fundraising events made up a little bit of the financial sufferings due to the Covid-19 lockdowns. Although this will not solve all problems but it certainly helps.

If you plan to organise more activities to gain support for research funding you may use the Messages of Hope compilation video: https://drive.google.com/file/d/18pSXgC0JcGERhZOQq5gDPf_UK1xEremG/view

 

Thank you all for the efforts and energy in raising awareness for mitochondrial disease!

LHON Awareness Day logo

  LHON Awareness Day - Saturday 19 September

The first LHON Awareness Day proved a success with a Facebook Live event being watched by viewers from across Europe, the US, Brazil and India.

Jo de Bry hosted the event and first introduced Elja van der Veer, Chair of IMP, spoke about the importance of a global voice and the work of IMP. Phil Yeske spoke about UMDF, the research it has funded and the work of a national mito organisation. Patients from the Netherlands, Sweden, Spain, Germany, Portugal, the USA, and Canada shared their experiences and were shining examples of patients who have not let LHON stop them achieving their dreams. Paula Morandi, from Italy closed the event, discussing her vision for a LHON Awareness Day. The event and the establishment of the day itself were driven by Paula, who has been an advocate for LHON patients for many years.

Thank you to the amazing participants and to everyone who watched the live event and posted comments.  

The event is available to watch on Facebook

Paula spearheaded the creation of a new LHON brochure for patients and medical professionals. The brochure is currently available in Italian and English and can be downloaded below.

 

 LHON Brochure in English                     LHON Brochure in Italian

 

 

World Mitochondrial Disease Week logo

 

World Mitochondrial Disease Week Events

 

 

Events are taking place all over the world during World Mitochondrial Disease Week. 

Events include webinars for patients, doctors and researchers, virtual walks, Mito on My Street in the UK, Porch Light Up in Canada, Support Meetings, Light a Light for Mito hosted by Mito Action in the USA, an international effort for Light Up for Mito, and a Facebook Live event for LHON Awareness Day. 

Due to COVID-19 restrictions, many of the events are taking place online, making them accessible to more people. 

Find out more about these events and how you can participate. 

 

 

Mitofin logo

 

Mitochondrial Association Finland (Mitofin) Joins IMP

 

IMP is delighted to welcome the Mitochondrial Association Finland (Mitofin) as its newest member.   

Mitofin is the only association in Scandinavia and Baltic area focused on mitochondrial disease. Founded 2018, it operates thanks to the support of volunteers.

The association offers support to its members, and it works closely with the University of Helsinki's Anu Wartiovaara group and other researchers.

Find out more at www.mitokondrioyhdistys.com on Facebook or on Instagram.

Mitofin is the sixteenth national mitochondrial disease organisation to join IMP. 

The map below gives a visual representation of the countries our members are located in: 

Australia - Mito Foundation

Belgium - Boks

Bulgaria - National Association of Patients with Mitochondrial Diseases

Canada - MitoCanada

Finland - Mitofin

France - Ammi

Germany - GDM

Italy - Mitocon

Spain - AEPMI

UK - The Lily Foundation & MDUK

USA - MitoAction & UMDF

Find out more about our members.

 Map of IMP Members

 

© 2020 Int. Mito Patients