IMP Annual Meeting a great success
In June IMP welcomed almost all of its members to its Annual General Meeting in Italy.
Day one included a demonstration of the Genomit: Global Mitochondrial Disease Patient Registry, which is due to launch later this year in Italy. The Registry will create a global natural history dataset which can be matched with clinical data, making it an invaluable resource for everyone working to improve the lives of people affected by mito.
Our members had the rare opportunity to present their organisations to each other, providing a valuable insight into how different organisations support their local mito communities, advocate for change, educate healthcare professionals and raise funds to underwrite their work.
Professor Prigione from Germany presented an update on the CureMILS and Sympathic projects. You can read more about the Sympathic programmes below. We were also joined by Professor Gorman and Dr Butterworth from the Wellcome Centre for Mitochondrial Research, Newcastle in the UK. They thanked IMP for our support of their application to LifeArc for a new rare disease centre.
Professor Spinazolla shared an update on her work as a Professor of Neuroscience and Mitochondrial Medicine at University College London in the UK. She has recently received a £1 million grant from the Medical Research Council of UK to progress research into potential treatments for mitochondrial DNA disorders.
During the official part of the AGM, Elja van der Veer, was voted onto the IMP Board. Elja is the Founder of IMP. She ran the organisation for 10 years, before retiring a couple of years ago. Elja is an important addition to our Board, with her wealth of experience and knowledge. We are delighted to have Elja working with us again.
As the day drew to a close, the members split into small groups to workshop the questions of what IMP's priorities and strategic direction should be. IMP is led by our members and so the input we received will be instrumental in how IMP develops. The Board will report back to the members over the coming months on how we will use the outcomes from the workshops to develop our strategic direction.
IMP members were joined on the second day by people affected by mito, most of the patients and their families were from Italy, with others from countries including Romania and Luxembourg.
Presentations on topics included mitochondrial donation, which has become a reality in the UK and Australia, thanks to the incredible efforts of the Lily Foundation and Mito Foundation. Italy and Belgium are also looking to make the IVF technique accessible to people affected by mito.
Professors Rahman and Mancuso provided updates on the latest research taking place in mitochondrial medicine. It was encouraging to hear of developments and areas of research that it is hoped will take us closer to effective treatments and ultimately cures.
Representatives from pharmaceutical companies shared information on clinical trials and potential new treatments. Providing hope for many patients.
After several years of online Annual Meetings, it was great to meet so many representatives from our member organisations in person in Bologna. With relationships strengthened between organisations, and ideas for new collaborations explored, it was an important reminder of how valuable chatting during a coffee break can be! We are grateful to all of our members who attended in person and online, and for their input into a successful meeting.
We would like to thank our colleagues at Mitocon for their assistance in organising the meeting, and to our industry partners for supporting the meeting.
Euromit June 2023
Euromit's Opening Ceremony began as the IMP Annual Meeting concluded. For the first time, IMP’s Chair – Kira Mann – was invited to present to the delegates. To share the patient voice during the Opening Ceremony was a honour and showed how far we, as a family of patient organsations, have come in bring patients to the forefront of mitochondrial medicine. We thank the Euromit organisers for this opportunity.
There was a constant buzz of excitement around the IMP booth at Euromit. Some of the world's leading researchers and clinicians spoke to our members at the booth. They stood alongside those just starting their careers, patients and families, other non-profit organisations, and representatives from industry.
During the meeting, IMP representatives met with research project leaders, clinicians looking for ways to support their patients in countries where there isn’t a patient organisation, and representatives from industry to discuss potential funding opportunities.
Euromit also provided the opportunity to watch unmissable presentations about the latest developments in mitochondrial medicine.
The Lily Foundation, one of IMP’s members, published a great report on Euromit.
Watch: LHON & the Family Webinar and Video
As part of LHON Awareness Day, IMP held a webinar inviting people to share their experiences of living with LHON and the impact on family members.
You can watch the recording of the webinar by clicking here
We have also released a video that helps people gain more insight into the impact of living with LHON, both for patients and their families. You can watch this moving video by clicking on the image or clicking here
To find out more about LHON, read our page
To find out more about World Mitochondrial Disease Week and LHON Awareness Day, click here
Tuesday 12 September 2023 is TK2d Awareness Day!
How you can help
Get social! Share our posts or create your own. We're excited to share with you our brand new 2023 TK2D Awareness Day infographic and we'd love for you to share this across your networks.
Click to download the English version , or follow the links for versions in Italian, Spanish, and German:
Download in German
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Download in Italian
Use the infographics to share key messages about mito on your social media channels, and don't forget to use #TK2dAwareness and #WorldMitoWeek to join the conversation!
Feel free to also use our 'Rare, but worth the share' TD2K infographic, which we use all year round (click on a link below)
Click to download the infographic in French,
Download in Spanish
Download in German
Download in Italian
Download in Portuguese
We have also produced a factsheet to help people understand Thymidine kinase 2 deficiency (TK2d)
To download the Understanding TK2D Factsheet in English, click here.
Download in French
Download in German
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You can find more information at www.tk2d.com
World Mitochondrial Disease Week raises awareness of mitochondrial disease (mito) on a global scale through educational, fundraising and advocacy activities. It includes LHON Awareness Day and Light Up for Mito. This year's awareness week ran from 18 - 24 September 2023.
This year the theme of World Mitochondrial Disease Week was fatigue.
Everyone has mitochondria in their cells. They are like our batteries and provide 90% of the energy needed for us to live. When your mitochondria don’t work properly it can be life threatening.
One of the main symptoms across most of the 400+ types of mitochondrial disease is fatigue.
Visit the World Mitochondrial Disease Week website to learn more about the events involved.
LHON Awareness Day - Watch our webinar: "LHON and the Family"
On LHON Awareness Day (19 Sept 2023) , we held an interactive webinar where we explored how the disease affects both those living with LHON and their families. LHON can have a devastating effect on patients – but it doesn’t stop there. The impact on family members can be overwhelming.
We were joined by over 40 people as we discussed and heard from those living with LHON. To watch the recording click here
Vision loss o
ccurs most frequently to young people, often as they are planning their future. Dreams of careers and independence may be shattered. The excitement of driving a car comes to a screeching halt. This period can be terrifying – both for the patient and for their family. Anger, guilt and depression are just some of the emotions that may all be experienced. Trying to navigate the new reality can take a huge toll on everyone.
But over time, acceptance grows and life continues. LHON may close some doors, but there are many others that you can open, go through and find happiness and success – it may just look a little different from what you planned.
Watch this moving 20min video where patients and their family members describe life with LHON
Light Up for Mito - 23 September 2023
This year over 300 monuments participated in Light up for Mito! We'll be collecting images of this amazing global event and they'll be available to view here soon.
Social media
Use our hashtags to see what our partners and friends were up to during Awareness Week!
#WorldMitoWeek #lightupformito #mitochondrialdisease #mito
Mito Facts
We produced an easy to use toolkit of images, graphics and social media messaging for Awareness Week. Anyone who would like to use and promote the content can download the toolkit to help them share our Mito Facts on social media. The Mito Fact cards can be used as they are, translated or used as a template.
Click here to download the Mito Facts social medial toolkit
Faces of Mito
We invite people affected by mito to share their stories with us. This is an important and powerful way to increase awareness of mito. To view these stories, click here or visit the Facebook and Instagram pages.
If you'd like to offer your story, we'd love to hear from you. This email address is being protected from spambots. You need JavaScript enabled to view it.
© 2023 Int. Mito Patients