The 10th Italian Meeting on Mitochondrial Diseases, held virtually on 9 and 10 October, has been particularly rich. The event involved the international scientific community, with more than 20 speakers and more than 350 registered people, among  whom experts, patients and family members, from over 30 countries. This shows how international the mito community is!

The meeting focused on progress in the field of mitochondrial medicine, the latest news on gene therapy and the acceleration of the involvement of "high tech" in daily practice. A very important part was dedicated to the research of therapies, with a specific focus on an update on ongoing clinical trials.

 Click here to watch the videos on Mitocon's YouTube (in English).

 After the plenary meeting Mitocon organised two webinars for patients and families:

 Monday 19 October 5 pm-7pm (CEST)
"A look at the scenarios opened by science"

The webinar focused on topics of specific interest for patients, family members and caregivers: techniques for preventing the transmission of mitochondrial diseases, the response to vaccines and immunometabolism and nutrition.
Click here to watch the webinar (in Italian).

Wednesday 21 October 5 pm-7pm (CEST)
"Pills from the scientific sessions of the 10th Italian Meeting on Mitochondrial Diseases"

The webinar provided a brief overview of the main contents of the scientific sessions of the 10th Italian Meeting on Mitochondrial Diseases.
Click here to watch the webinar (in Italian).

What is this study about?

The Highly Specialised Service for Rare Mitochondrial Disorders in London has created a database to register children and adults with mitochondrial disease who contract "Coronavirus Disease 2019" (COVID-19). The reason for doing this is to understand how COVID-19 affects people with mitochondrial disease, and whether the response is different to people without mitochondrial disease. It is hoped that this knowledge will improve the treatment of COVID-19 in people with mitochondrial disease. Details concerning your mitochondrial disease and the symptoms and treatment received for COVID-19 are entered into the database, but no identifiable information is included (i.e., the data is anonymised). The research team might contact your mitochondrial specialist to confirm certain details surrounding your diagnosis and relevant medical professionals involved in your COVID-19 treatment. This is particularly relevant if you were admitted to hospital with COVID-19.

Who can take part?

The study is aimed at anyone (children or adults) with strongly suspected or genetically confirmed mitochondrial disease with either suspected or confirmed COVID-19. From all countries in the world. We would encourage the mitochondrial community to report all cases of COVID-19 irrespective of the symptoms and severity. This means people without symptoms, in whom COVID-19 was detected through routine screening, and those with typical (fever, cough and/or loss of smell/taste) or atypical symptoms would be included. We would also like to include both people who stayed at home and those that required admission to hospital. Finally, we would like to include people who had both a positive COVID-19 test (swab or blood test) and those with symptoms suggestive of COVID-19, even if they had a negative COVID-19 test.

What is involved in taking part?

The study will help to develop a database of individuals with mitochondrial diseases and confirmed or suspected COVID-19. The database is anonymous, so the name or any other personal details (for example, date of birth) will not be collected. To participate, please contact Dr Chiara Pizzamiglio (This email address is being protected from spambots. You need JavaScript enabled to view it.) and Dr Robert Pitceathly (This email address is being protected from spambots. You need JavaScript enabled to view it.) and they will contact you to obtain further information concerning your diagnosis and COVID-19 experience. The time required to obtain all the information is approximately 15-20 minutes. Please note that you will not be provided with clinical advice on the management of COVID-19.

Are there any risks?

There are no risks in participating in the study.

Who will benefit?

The research team hopes to understand how COVID-19 affects people with mitochondrial disease to improve knowledge of the course and improve management of the infection in people with mitochondrial disease.

How do I find out more?

If you would like to know more about the study or would like to participate please contact Dr Chiara Pizzamiglio (This email address is being protected from spambots. You need JavaScript enabled to view it.) and Dr Robert Pitceathly (This email address is being protected from spambots. You need JavaScript enabled to view it.).

 

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

 

 

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