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

 

Image of DNA

 

Gene Therapies and the Promise for Mitochondrial Disease

A Virtual Symposium

 

The Mito Foundation will hold a digital symposium on Thursday 17 September, as part of World Mitochondrial Disease Week (formerly Global Mitochondrial Disease Awareness Week). The Symposium will gather leading local and international mitochondrial disease (mito) experts to explore the latest research developments and their implications on future treatments and diagnosis of mito.

The Symposium's theme is "Gene Therapies and the Promise for Mitochondrial Disease".

Curated by two leading Australian mitochondrial disease experts, Prof Mike Ryan and Prof David Thorburn, the Symposium will explore the latest in gene therapies and the implications for future diagnosis and treatments.

The line-up of expert speakers from around the globe includes:

  • Prof Ian Alexander, Children's Medical Research Institute (Australia)
  • Dr Carlos Moraes, Miller School of Medicine, University of Miami (USA)
  • Dr Vamsi Mootha, Howard Hughes Medical Institute & Harvard Medical School (USA)
  • Dr Beverly Mok, Harvard University (USA)

This is a rare opportunity to hear about the developments in mitochondrial research directly from the researchers. 

Find out more.

 

 

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