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IMP Newsletter #36 : January 2022

Happy New Year! We hope you all had a safe and happy holiday season, although we know that it can be a difficult time for many within our commits.

The IMP Board has been hard at work to evaluate the ways IMP can continue to make a measurable impact on the global mitochondrial disease community and the ways in which we can support our member organisations. On the agenda for 2022 is the review of the List of Medicines to be used with caution, the next phase of the CureMILS project and the Global Registry initiative. We will also be entering into a strategic planning exercise to set the stage for the future of IMP. Be sure to check back with us for updates on the progress of these important projects.

Thank you so much to everyone who participated in World Mitochondrial Disease Week last year. It was fantastic to see so many members, and their local mito communities, raise awareness throughout the week. Please save the date for World Mitochondrial Disease Week 2022, LHON Awareness Day and Light Up for Mito - details below. This year there will be an inaugural TK2D Awareness Day leading up to Awareness Week.

The IMP Board also recently launched a member survey so that we can continue to evaluate the best ways we can support each of our partner patient advocacy organisations, opportunities for collaboration and how we can continue to serve the greater mitochondrial disease community. We welcome your feedback and ideas.

We hope that you will stay in touch, continue to visit the website and learn how you can become involved with IMP during 2022. Together, we are stronger and it is an honour to lead this charge for the global community.

Best wishes,

Kira Mann
Chair of IMP

Please email Jo at jodebry@mitopatients.org, for more information about anything written below.

New Member

Welcome to our newest member LHON Deutschland e.V. IMP is excited to work with them to support people living with LHON around the world. LHON Deutschland e.V. has played an important role in the last two LHON Awareness Day events by providing patients who have shared their experiences during the Facebook live events.

Tom Schuster commented, “We are a German-speaking self-help association for people with the very rare eye disease LHON. We want to make rare things visible and look with you strengthened, into the future! The focus of our young association is self-help and the creation of awareness for LHON. Therefore, we are committed to a broad education, so that LHON becomes more visible and better diagnosable. In the sense of the founding spirit we bring together patients, relatives as well as interested persons, create common networking and personal exchange. With the decision to join IMP, we take networking to a new, international level. We want to be an informative and helpful anchor for everyone and accompany and support you in your life with LHON.”

Paula Morandi, IMP Board Member commented, “As the LHON Patients Representative for Mitocon and IMP I’m extremely pleased to welcome LHON Deutschland e.V. to IMP as I have always expressed the importance to spread awareness on LHON particularly as it is often mistaken for an eye or retinal disorder which has nothing to do with the MTDNA. Today, since we have a drug which has been approved by EMA for the treatment of LHON, it is very important to join forces so as to reach a diagnosis as soon as possible and start treatment before it’s too late. IMP is the perfect network which brings patients and clinicians together towards finding a cure."

Visit LHON Deutschland’s website

Thank you to all our members who participated in World Mitochondrial Disease Week and raised awareness around the world. Working together we raised awareness, highlighted many of the issues facing people with mito, and celebrated our incredible mito warriors around the world. Our members hosted events including sponsored runs and walks, symposiums, support meetings, and workshops.

LHON Awareness Day featured a Facebook Live event during which experts and patients around the world shared their experiences of how technology has impacted their lives. Tools from smart phones to computer applications were discussed and tips highlighted. The video received 147 engagements and reached over 2,200 people internationally. Thank you to all those who participated in the event on 19 September.

Watch video

Kokkola City Theatre, Finland

An impressive 237 buildings, monuments and landmarks were illuminated in green on 25 September for Light Up for Mito – more than 70 more than last year. Forty-nine of the landmarks were in Spain, 43 in Finland (including Kokkola City Theatre pictured), 38 in Canada, 35 in Italy and 28 in Australia, with others in France, the UK, Romania, Bulgaria the US, Mexico, Germany, Argentina, Chile, Slovakia and Japan. Thank you to everyone who secured participants, secured media coverage and shared photos on social media.

View Photos

Faces of Mito
This year more than 40 stories were featured on social media as part of the Faces of Mito campaign. One of stories reached over 4,000 people on Facebook. We love celebrating our mito warriors, and remembering fondly those who were taken too soon.

Messages of Hope
The Messages of Hope video featured leading researchers from Australia, Italy, Germany and the UK, who shared information about their latest research and hope for the future. It was viewed on Facebook nearly 800 times and shared more than 30 times.

Watch video

The World Mitochondrial Disease Week website received more than 8,800 views. Facebook remains our strongest social media channel, with almost 300 more fans liking the page during the week. Our top Facebook post reached nearly 10,000 people.

However you marked World Mitochondrial Disease Week - thank you for coming together and helping to make our global voice heard.

Mitochondrial Donation in Australia

Mitochondrial donation has taken a step further to become available to families in Australia.

Sixty eminent scientists, doctors and medical experts signed an open letter in support of Maeve's Law, urging the Australian Federal Parliamentarians to vote Yes. At the end of November, the House of Representatives voted yes for Maeve's Law and now the Bill sits with the Senate. IMP has provided support to the Mito Foundation and congratulations Sean Murray and his team on their dedication to changing legislation to giving families affected by mito the opportunity to use mito donation to have children free from mito.

Read Open Letter

Global Patient Registry

Progress continues with the development of the Global Mitochondrial Disease Patient Registry as part of the GENOMIT project. We are committed to laying robust foundations for the registry, which will allow it to grow both in terms of PROMS and the countries that can join it. The Registry will be available in different languages and will be designed to make it as easy as possible for patients to use. It will be connected to the GENOMIT Clinical Registry.

We continue to seek input and advice from regulatory bodies and registry experts, to ensure the registry will become an invaluable tool in the creation of new therapies and the understanding of mitochondrial disease worldwide.

IMP Membership Survey 2021

Thank you to those of you who completed our Membership Survey. We really appreciate your input and will be working out the best way to address your hopes and needs in the future.

Key findings from the survey included:
- A desire for IMP to provide more information on treatments and access to clinical trials, as well as guidance on best practices in areas such as support provision
- Hosting of workshops with clinicians, researchers, pharmaceutical companies, regulators etc on specific subjects
- More opportunities for members to engage with IMP's projects and participate in sub-committees/steering groups etc.
- An increase in communications about IMP's ongoing work

If you haven't yet completed the survey, but want your voice to be heard please respond by 29 January 2022.

IMP exists to support our members and so it is vital we listen to you and add value to your work.

Complete Survey

CureMILS

The CureMILS research project aims to develop therapies for mitochondrial DNA-associated Leigh syndrome (MILS).

As a partner in the CureMILS project, IMP is ensuring the patient voice is heard within this exciting research programme. We are working with the consortium to create a survey and workshop(s) with patients to understand what they feel would be meaningful in terms of treatments. The programme is committed to involving patients in the scientific discussion.

Phil Yeske, IMP Board Member commented, “This is a very exciting project that has already led to the identification of potential drug candidates to treat MILS. I commend the investigators for so deeply involving the mitochondrial disease patient community in their research.”

Khondrion completes enrollment in KHENERGYZE Phase IIb trial evaluating sonlicromanol in adult patients with MELAS spectrum disorders

MEDIA RELEASE: Khondrion, a clinical stage biopharmaceutical company discovering and developing therapies targeting primary mitochondrial diseases, today announced that the last patient has been dosed with sonlicromanol in the KHENERGYZE Phase IIb clinical study. Sonlicromanol is Khondrion’s wholly-owned, lead asset being developed to treat a range of mitochondrial diseases in children and adults. Topline data from KHENERGYZE is expected in the third quarter of 2022.

UN Resolution Passed

First-ever United Nations Resolution to Increase Visibility for the 300 Million Persons Living with a Rare Disease

A global grassroots campaign led by persons living with a rare disease and their families has succeeded in securing the adoption of the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”

[Brussels / New York], 16 December 2021 – Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS-Rare Diseases Europe announced today that the UN General Assembly formally adopted a resolution recognising the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families.

The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.

Adopted by consensus by the 193 UN Member States

Myology & MitoNice 2022

The 7th International Congress of Myology and MitoNice 2022 - Mitochondrial Medicine Meeting are open for registration.

Find out more

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