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 occurs 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.
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
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.