Mito Meet Up 2024: A huge success!

We’re pleased to report that this year’s Meet Up event was another huge success!
Twenty-three families impacted by mitochondrial disease were represented at our annual event for missionees to meet, socialise, take part in activities & workshops and have a fun weekend away from normal life.
This event was generously funded by the National Lottery Community Fund. Thank you to National Lottery Players!

We had lots on offer, from medical workshops with Dr Yi Ng and Dr Renae Stefanetti…

…to research workshops with Dr Maria O’Hanlon, Research Manager, The Lily Foundation as well as Professor Kostas Tokatlidis, Fara van der Schans and Dr Daniela Vitali who video called in from the University of Glasgow…

…and an inspiring journalling workshop with our My Mito Mission counsellor Karen Baker.

We offered relaxing holistic therapies throughout the weekend, kindly donated by Emma Richardson of Hebask Treatments, and Sharon Berry of Alpha Omega Holistics, as well as 1-1 counselling sessions with Karen Baker of KJB Counselling.
Our volunteers worked hard to ensure an exciting, stress-free weekend for attendees, with Chloe, Rebecca, Jason, Sophie, Dawn & Liz running craft stalls and outdoor activities for the kids.

Volunteers Sue and Tony helped to look after missionee Katie’s family across the weekend, building on a very special bond formed at last year’s Meet Up.

“We definitely feel the love. So sad to be home. Phoebe cried for almost the whole train journey and Thomas wants Tony to take him to school. Tony and Sue, you are officially not just Mito Meet Up adopted grandparents, [you’re] forever adopted grandparents.”
-Elaine & Leigh, Katie’s parents

On our first night, we hosted a ‘Speed Meet’ to allow missions to connect with some people they might not have before and ease us into the weekend.
We also had Karen hosting a film and music quiz with prizes for first, second & third place! Our winners were pretty proud of themselves…

Saturday was a big day, firstly with our bereavement workshop taking place in the morning coordinated by co-founder and chair Christine and her husband Peter.

We hosted two medical workshops and two research workshops, to ensure that all who wanted to, could attend.

A few of our missions set sail for Saturday afternoon, enjoying a fully accessible canal boat trip kindly provided by Safe Anchor Trust. We would also like to thank Focus4Hope for the use of their minibus.

We had a visit from Abel’s Mini Farm petting zoo, which was a delightful experience for adults and kids alike!

We hosted an entertainer for the kids on Saturday evening, who ensured they were very entertained with magic, music, and balloon swords!

Our final day came along, much to everybody’s disappointment, but we had a lot of fun at our fundraising and awareness stalls, where missions could spend the ‘tokens’ given out in their welcome packs and get inspired by the ideas that filled the room!

Our BSL interpreter Michelle was incredible, providing interpretation for our hard of hearing missions Louise & Alison.
“What made it so special was having a BSL interpreter, I did not miss a single word! Thank you.”
-Alison

Reviews of the weekend included:
“From the minute we stepped through the hotel door it was like we had met you before, you made [us] so welcome, you went above and beyond to make our weekend special. Thank you just isn’t enough, honestly we are so grateful, you are all gems and a great inspiration. You all must be so proud for the amount of smiles you put on people’s faces this weekend… Can’t wait to meet up with you all again, if only the world was full of a mito family like you.”
“Every minute has been amazing. It feels as though I have known everyone forever. I am blown away at the dedication from every single person! So grateful to have made memories to treasure forever.”
“I have really enjoyed being here and being a part of everything. Everybody is so friendly and I was never made to feel left out. I’ve been made to feel so welcome and it’s been lovely meeting new people.”
“Your volunteers are so amazing, so caring, so kind and compassionate…”
“The best weekend!”

It was clear how much it meant to our missions to have time away from normal life, and to be around people who just ‘get it’.

It’s so important for us to provide this unique experience for people who are impacted by mitochondrial disease. Mito is a cruel, debilitating, potentially life-limiting illness with no treatments or cure, and it can be a very lonely diagnosis.

However, charities like My Mito Mission can make a huge difference, providing support, raising awareness, and inspiring vital research.
A huge thank you goes out to:
Our staff, trustees and volunteers- we couldn’t possibly do it without you!
Our voluntary service providers- photographer John Steel, BSL interpreter Michelle, holistic therapists Emma Richardson (Hebask) and Sharon Berry (Alpha Omega Holistics), and our counsellor Karen Baker (KJB Counselling).
Our medical and research guests, for their brilliant insights.
The staff at Holiday Inn Brighouse, who were an absolutely huge help in every way!
Our videographer Jack Masterson, who ensured a comfortable environment for all involved in our filmed interviews.
And finally, a massive thank you to our funders at the National Lottery Community Fund. Thank you to National Lottery players for allowing us to support people with mitochondrial disease.

Mito Meet Up 2024: A huge success!

My Mito meet up 2024 news imageWe’re pleased to report that this year’s My Mito Meet Up was another huge success!

Read on and be sure to check out our fabulous video of the event here on YouTube or at the end of this article.

Twenty-three families impacted by mitochondrial disease were represented at our annual event for missionees to meet, socialise, take part in activities & workshops and have a fun weekend away from normal life. This event was generously funded by the National Lottery Community Fund. Thank you to National Lottery players!

Mini petting farm My Mito Meet Up

We had lots on offer, from medical workshops with Dr Yi Ng and Dr Renae Stefanetti…

medical workshop at meet up

…to research workshops with Dr Maria O’Hanlon, Research Manager at The Lily Foundation as well as Professor Kostas Tokatlidis, Fara van der Schans and Dr Daniela Vitali who video called in from the University of Glasgow…

maria o'hanlon

…and an inspiring journalling workshop with our My Mito Mission counsellor Karen Baker.

workshop with missionees

We offered relaxing holistic therapies throughout the weekend, kindly donated by Emma Richardson of Hebask Treatments, and Sharon Berry of Alpha Omega Holistics, as well as 1-1 counselling sessions with Karen Baker of KJB Counselling. Our volunteers worked hard to ensure an exciting, stress-free weekend for attendees, with Chloe, Rebecca, Jason, Sophie, Dawn & Liz running craft stalls and outdoor activities for the kids.

arts & crafts

Volunteers Sue and Tony helped to look after missionee Katie’s family across the weekend, building on a very special bond formed at last year’s Meet Up.

katie's familysue & tony with katie's family

“We definitely feel the love. So sad to be home. Phoebe cried for almost the whole train journey and Thomas wants Tony to take him to school. Tony and Sue, you are officially not just Mito Meet Up adopted grandparents, [you’re] forever adopted grandparents.”

-Elaine & Leigh, Katie’s parents

On our first night, we hosted a ‘Speed Meet’ to allow missions to connect with some people they might not have before and ease us into the weekend. We also had Karen hosting a film and music quiz with prizes for first, second & third place! Our winners were pretty proud of themselves…

quiz quiz winners

Saturday was a big day, firstly with our bereavement workshop taking place in the morning coordinated by co-founder and chair Christine and her husband Peter.

bereavement table

We hosted two medical workshops and two research workshops, to ensure that all who wanted to, could attend. A few of our missions set sail for Saturday afternoon, enjoying a fully accessible canal boat trip kindly provided by Safe Anchor Trust. We would also like to thank Focus4Hope for the use of their minibus.

canal boat canal boat fun

We had a visit from Abel’s Mini Farm petting zoo, which was a delightful experience for adults and kids alike!

petting zoomini farmkate with a duckmini petting farm

We hosted an entertainer for the kids on Saturday evening, who ensured they were engrossed in magic, music, and balloon swords!

kids entertainer

Our final day came along, much to everybody’s disappointment, but we had a lot of fun at our fundraising and awareness stalls, where missions could spend the ‘tokens’ given out in their welcome packs and get inspired by the ideas that filled the room!

sabrina stallgoodie bag

sophie at a stallchristine & danielle

tombolainspiration board

Our BSL interpreter Michelle was incredible, providing interpretation for our hard of hearing missions Louise & Alison.

“What made it so special was having a BSL interpreter, I did not miss a single word! Thank you.”

-Missionee Alison

Reviews of the weekend included:

“From the minute we stepped through the hotel door it was like we had met you before, you made [us] so welcome, you went above and beyond to make our weekend special. Thank you just isn’t enough, honestly we are so grateful, you are all gems and a great inspiration. You all must be so proud for the amount of smiles you put on people’s faces this weekend… Can’t wait to meet up with you all again, if only the world was full of a mito family like you.”

“Every minute has been amazing. It feels as though I have known everyone forever. I am blown away at the dedication from every single person! So grateful to have made memories to treasure forever.”

“I have really enjoyed being here and being a part of everything. Everybody is so friendly and I was never made to feel left out. I’ve been made to feel so welcome and it’s been lovely meeting new people.”

“Your volunteers are so amazing, so caring, so kind and compassionate…”

“The best weekend!”

It was clear how much it meant to our missions to have time away from normal life, and to be around people who just ‘get it’.

It’s so important for us to provide this unique experience for people who are impacted by mitochondrial disease. Mito is a cruel, debilitating, potentially life-limiting illness with no treatments or cure, and it can be a very lonely diagnosis.

However, charities like My Mito Mission can make a huge difference, providing support, raising awareness, and inspiring vital research.

A huge thank you goes out to:

Our staff, trustees and volunteers- we couldn’t possibly do it without you!

Our voluntary service providers- photographer John Steel, BSL interpreter Michelle, holistic therapists Emma Richardson and Sharon Berry, and our counsellor Karen Baker.

Our medical and research guests, for their brilliant insights.

The staff at Holiday Inn Brighouse, who were an absolutely huge help in every way!

Our videographer Jack Masterson, who ensured a comfortable environment for all involved in our filmed interviews.

And finally, a massive thank you to our funders at the National Lottery Community Fund. Thank you to National Lottery players for allowing us to support people with mitochondrial disease.

building a towergroup pic

Marvellous My Mito Meet-Up 2023!

Our missionees from around the UK came together at the Holiday Inn, Brighouse for our second annual ‘meet up’ on Friday 13th, Saturday 14th and Sunday 15th October.

We had an amazing time making new connections, renewing existing friendships, gaining new insights, creating awareness-raising resources, getting inspired and of course having fun along the way.

We were delighted to be awarded a fabulous £10,000 from the National Lottery Community Fund to help make it happen.

Over the weekend we held three informative workshops on the subjects of bereavement, research and the medical aspects of mito.

Our bereavement workshop enabled those families who have lost loved ones to mitochondrial disease to join together in honouring them and explore ways to form continuing bonds going forward. Beautiful lanterns were made in their names along with hearts for our memorial tree – all displayed for the rest of the weekend in our poignant remembrance area.

The research workshop was headed up by Professor Kostas Tokatlidis accompanied by Fara Van Der Schans both from the team at the School of Molecular Biosciences, University of Glasgow. Attendees were able to hear information and updates on research into mitochondrial disease and mitochondrial dysfunction – and its potential to bring breakthroughs for many common conditions as well as mito. A Q&A rounded off a fascinating and all-too-short hour.

Our medical workshop was lead by Professor Grainne Gorman and some of her team from The Newcastle Mitochondrial Disease Clinic for Adults and Children – Doctor Yi Ng and Doctor Renae Stefanetti. Mitochondrial disease patients and their families had a valuable and rare opportunity to ask questions in a non-clinical setting with another fascinating question and answer session.

Everyone who attended the workshops were in agreement that they had been a valuable part of the weekend and that much still needed to be done to increase and fast track research and improve medical services.

Marvellous My Mito Meet Up 2023!

cherished connections news imageOur missionees from around the UK came together at the Holiday Inn, Brighouse for our second annual ‘meet up’ on Friday 13th, Saturday 14th and Sunday 15th October.

We had an amazing time making new connections, renewing existing friendships, gaining new insights, creating awareness-raising resources, getting inspired and of course having fun along the way.

We were delighted to be awarded a fabulous £10,000 from the National Lottery Community Fund for our meet up.  Huge thanks to them and all National Lottery players.

Petting zoo and lottery bereavement table and lottery

Over the weekend we held three informative workshops on the subjects of bereavement, research and the medical aspects of mito.

The research workshop was headed up by Professor Kostas Tokatlidis accompanied by Fara Van Der Schans both from the team at the School of Molecular Biosciences, University of Glasgow.   Our medical workshop was lead by Professor Grainne Gorman and some of her team from The Newcastle Mitochondrial Disease Clinic for Adults and Children – Doctor Yi Ng and Doctor Renae Stefanetti.

workshop photo my mito meet up 23

Mitochondrial disease patients and their families had a valuable and rare opportunity to hear information first hand and ask questions.  Everyone who attended the workshops were in agreement that they had been a valuable part of the weekend and that much still needed to be done to increase and fast track research and improve medical services.

Fara and Kostas My Mito Meet Up '23 Grainne Gorman My Mito Meet Up '23

Amongst the many activities to suit all ages was creating our ‘My Mito Montage’.   This is a collaborative piece of art representing our connectedness and feelings about being impacted by mitochondrial disease.  It will be treasured by our charity, kept at our HQ and used to help illustrate our message in the future.  Our montage was made possible by our trustee and co-event organiser, Amanda Caldwell and her fabulous team from The Space at Field Lane.

Danni with montage square Chloe with montage square

My Mito Montage

Our invaluable volunteers – including our terrific trustees – worked amazingly hard both before and during the event to make it as magical as possible for everyone attending.  

We also had some very special volunteers who donated their professional services free of charge.  Julie Acton from Clinical Reflexology in Calderdale, Karen Baker of KJB Counselling, Sharon Berry from Alpha Omega Holistics and Howard Pickles from Templars Photography.

Volunteers image news

Having mitochondrial disease can be incredibly isolating when so little is known about it by those around you. That’s why getting everyone together face to face is so important … the peer support that results is priceless.  During our weekend friendships were made and nurtured which will bring people comfort and support in their future journeys dealing with the impacts of mito. 

A picture speaks a thousand words and we hope photos begin to illustrate the precious connections and wonderful memories that we were made at our My Mito Meet Up ’23.

Aiman Rayan Nathan connected news Jake and Alison connection kids playing news imageSabring and Susan news image

We would like to thank all our supporters, without you we wouldn’t be able to do what we do!

My Mito Meet-Up 2023 Coming Soon!

Excitement is building within My Mito Mission as the My Mito Meet Up 2023 approaches, taking place 13-15th October 2023.

During the weekend our missions from around the UK are getting together for a wonderful weekend of fun, socialising and above all, support and new friendships.

Just one of the support projects we have been able to complete thanks to our fabulous supporters. More news of the weekend to follow soon!

My Mito Meet Up 2023 Coming Soon!

My Mito Meet Up 2023 News ImageExcitement is building within My Mito Mission as the My Mito Meet Up 2023 approaches, taking place 13-15th October 2023.

During the weekend, 22 of our missions from around the UK are getting together for a wonderful weekend of fun, learning, socialising and above all, support and new friendships.

Just one of the support projects we have been able to complete thanks to our fabulous supporters … and a huge amount of help from The National Lottery Community Fund.

National Lottery Community Fund logo

Pick-Me-Up Parcels

We are thrilled to have been able to partner up with The Willow Foundation and nominate some of those directly impacted by mito to receive a beautiful box of gifts. Just one of the support projects that we are able to help provide thanks to our supporters.

Huge thanks to The Willow Foundation for providing this thoughtful and heart warming service.

Pick-Me-Up Parcels.

Willow FoundationWe are thrilled to have been able to partner up with The Willow Foundation charity and nominate some of those directly impacted by mitochondrial disease to receive a beautiful box of gifts. This is just one of the support projects that we are able to help to provide thanks to all our wonderful supporters.

Huge thanks to The Willow Foundation for providing this thoughtful and heart warming service.

Susan Willow box

Steph willow box

Grants Update

Thanks to our fabulous supporters, we were able to contribute to an important new study through our friends at The Lily Foundation. Due to start next month, this study will explore the links between mito and neuropsychiatric diseases – a blanket term that covers a broad range of medical conditions involving neurology and psychiatry.

Read more here about this exciting project which will hopefully lead to improved information, mental health care and treatments for mito patients.

Our previous grant funding projects through Lily have been:
– 4-year gene editing research project
– support weekend for young adults
– enabling mitochondrial disease to become a part of The RUDY Study
… more information on all of these projects through the links.

With your amazing help, we’ll continue to raise awareness and hopes of treatments and a cure for mitochondrial disease, and support for those affected.

Grants Update.

Grants UpdateThanks to our fabulous supporters, we were able to contribute to an important new study through our friends at The Lily Foundation. Due to start next month, this study will explore the links between mito and neuropsychiatric diseases – a blanket term that covers a broad range of medical conditions involving neurology and psychiatry.

Read more here about this exciting project which will hopefully lead to improved information, mental health care and treatments for mito patients. 

Our previous grant funding projects through Lily have been:

With your amazing help, we’ll continue to raise awareness and hopes of treatments and a cure for mitochondrial disease, and support for those affected.

Grants Update

Thanks to our fabulous supporters, we were delighted to grant funds this year towards enabling mitochondrial disease to be added to the Rudy Study. Check out more about this project on their website.
We’re also very excited to be able to contribute to research about mito and mental health which will begin next year. Both of these through our friends at The Lily Foundation

Our previous grant funding projects through Lily have been a 4-year gene editing research project and a support weekend for young adults affected by mitochondrial disease.
With your amazing help, we’ll continue to raise awareness and hopes of treatments and a cure for mitochondrial disease, and support for those affected.

Grants Update.

Grants UpdateThanks to our fabulous supporters, we were delighted to grant funds this year towards enabling mitochondrial disease to be added to the Rudy Study. Check out more about this project on their website.

We’re also very excited to be able to contribute to research about mito and mental health which will begin next year. Both of these through our friends at The Lily Foundation

Our previous grant funding projects through Lily have been a 4-year gene editing research project and a support weekend for young adults affected by mitochondrial disease.

With your amazing help, we’ll continue to raise awareness and hopes of treatments and a cure for mitochondrial disease, and support for those affected.

Happy Mail for Regan

Can you help bring a smile to Regan? 
 
Regan, is one of our ‘missionees’ form
Regan’s Mito Mission and has had some challenging health issues due to having mito recently – that is sadly bringing upset and distress to his usual smiling face.

 
It would be a fantastic lift if he could receive some ‘happy mail’ – a card, a note, picture, small gift … anything. He loves to get post!  Please send them to Regan c/o My Mito Mission, 44d Long Ridge, Brighouse, HD6 3RZ and we’ll swiftly
forward them.
 
Thank you… and thank you to the family’s lovely friend, Margaret for the idea too.

Happy Mail for Regan.

Regan's Happy MailCan you help bring a smile to Regan? 

Regan, is one of our ‘missionees’ form
Regan’s Mito Mission and has had some challenging health issues due to having mito recently – that is sadly bringing upset and distress to his usual smiling face.

It would be a fantastic lift if he could receive some ‘happy mail’ – a card, a note, picture, small gift … anything. He loves to get post!  Please send them to Regan c/o My Mito Mission, 44d Long Ridge, Brighouse, HD6 3RZ and we’ll swiftly forward them.

Thank you… and thank you to the family’s lovely friend, Margaret for the idea too.

Hug Bundles Bring Lockdown Smiles

What better way to put our tombola and raffle donations to good use during the pandemic than to parcel some up for families and adults impacted by mito? Over 30 ‘Hug Bundles’ were sent out taking treats to those looking an extended lockdown

This follows our first support project in November 2019 where we were delighted to contribute to the very first support weekend for adults with mitochondrial disease, organised and hosted by The Lily Foundation.

We will continue to bring additional support to as many people as we can.

Hug Bundles Bring Some Lockdown Smiles.

Hug BundlesWhat better way to put our tombola and raffle donations to good use during the pandemic than to parcel some up for families and adults impacted by mito? Over 30 ‘Hug Bundles’ were sent out taking treats to those looking an extended lockdown

This follows our first support project in November 2019 where we were delighted to contribute to the very first support weekend for adults with mitochondrial disease, organised and hosted by The Lily Foundation.

We will continue to bring additional support to as many people as we can.

Covid 19 and Mito

Our friends at The Lily Foundation are liaising with their medical expert contacts with the aim of bringing mito patients the best advice for staying as safe as possible during the coronavirus pandemic. Please access this site here

The Wellcome Centre for Mitochondrial Research in Newcastle has shared some psychologic advice by Dr Russ Harris for facing Covid19 when shielding under lockdown which you can access here

Covid19 and Mito.

Covid 19 and MitoOur friends at The Lily Foundation are liaising with their medical expert contacts with the aim of bringing mito patients the best advice for staying as safe as possible during the coronavirus pandemic. Please access this site here.

The Wellcome Centre for Mitochondrial Research in Newcastle has shared some psychologic advice by Dr Russ Harris for facing Covid19 when shielding under lockdown which you can access here.