Lillia - MND

[Northstandboy]

Lillia is 19 years old, and she has a rare variant of MND. There are just twenty patients in the UK with this variant. There is a drug called Tofersen which can slow development of the condition and Lillia is a suitable candidate. The drug itself is available without charge via an early access programme but is administered via a monthly lumbar puncture. Lillia's local hospital cannot fund the staff to administer the treatment.

Her story is summarised at https://www.bbc.co.uk/news/articles/c3r7le5ywqlo

Both Lillia's father, Kevin and Lillia herself are Oxford United supporters. OUFC have been supportive and have invited Lillia and her family to our home match on 17th January.

There are two practical ways fans can help:

1. Sign the petition at https://c.org/HwW8YMDgLL asking for the treatment to be funded
2. Make a donation, if you are able, at https://www.justgiving.com/crowdfunding/lillia-jakeman

Please note that this is NOT a case of funding being required for a very expensive drug - what is needed is the funding and organisation needed to unlock this revolutionary treatment for Lillia, and the small number of patients like her.

 

[kevjakeman]

Lillia is 19 years old, and she has a rare variant of MND. There are just twenty patients in the UK with this variant. There is a drug called Tofersen which can slow development of the condition and Lillia is a suitable candidate. The drug itself is available without charge via an early access programme but is administered via a monthly lumbar puncture. Lillia's local hospital cannot fund the staff to administer the treatment.

Her story is summarised at https://www.bbc.co.uk/news/articles/c3r7le5ywqlo

Both Lillia's father, Kevin and Lillia herself are Oxford United supporters. OUFC have been supportive and have invited Lillia and her family to our home match on 17th January.

There are two practical ways fans can help:

1. Sign the petition at https://c.org/HwW8YMDgLL asking for the treatment to be funded
2. Make a donation, if you are able, at https://www.justgiving.com/crowdfunding/lillia-jakeman

Please note that this is NOT a case of funding being required for a very expensive drug - what is needed is the funding and organisation needed to unlock this revolutionary treatment for Lillia, and the small number of patients like her.

Thank you for sharing Lillia's story. I attach a few photos of Lillia over the years, she is really looking forward to the 17th Jan! Merry christmas all x

 

[kevjakeman]

CALL TO ACTION: Walk for Lillia — and others like her
“One More Light Walk” | 23–28 January

Largely accessible routes.
Real urgency.
Real people.

From 23–28 January, we’re walking to shine a light on SOD1 MND and the postcode lottery that delays care, treatment, and hope.

This walk is about time — because people with aggressive, rare forms of MND don’t have the luxury of waiting.

Start

Friday, 23 January | 9:00am
Southampton Hospital

A deliberate place to begin — where diagnosis happens, and where delay becomes painfully real.

The Walk

We’re using largely accessible routes, aiming for step-free, well-surfaced paths wherever possible.

You can join us for any part of the walk:
• 20 minutes
• A couple of miles
• A full day

Every person who joins makes the message louder.

Finish

Wednesday, 28 January | Westminster

We’ll finish with a meeting at Westminster with Caroline Nokes MP and Ian Byrne MP, Chair of the APPG for MND.

At the finish, we’ll cut through a length of red tape together — symbolising the need to cut through the bureaucracy and delays that are actively harming people with MND and other rare conditions.

Route & Approximate Mileage

Join us at any point — short stretches count.

Day 1 – Fri 23 Jan
Southampton Hospital → Winchester
~14 miles (halfway: Eastleigh)
Overnight: Winchester

Day 2 – Sat 24 Jan
Winchester → Basingstoke
~15 miles (halfway: Micheldever)
Overnight: Basingstoke

Day 3 – Sun 25 Jan
Basingstoke → Farnham
~17 miles (halfway: Odiham)
Overnight: Farnham

Day 4 – Mon 26 Jan
Farnham → Woking
~14 miles (halfway: Pirbright)
Overnight: Woking

Day 5 – Tues 27 Jan
Woking → Kingston upon Thames
~16 miles (halfway: Walton-on-Thames)
Overnight: Kingston upon Thames

Day 6 – Wed 28 Jan
Kingston upon Thames → Westminster
~9 miles (halfway: Putney)
Finish near Parliament

Key Days to Join

Day 1 – Friday, 23 January (9am)
Southampton Hospital → Winchester
Strong start. High visibility. Easier for people to join.

Day 6 – Wednesday, 28 January
Kingston → Westminster
Meeting at Westminster as close to 2pm as possible.
This is where the message lands — where decisions are made.

If you can only do one day, make it Day 6.

How You Can Help

• Walk with us
• Bring someone with you
• Share this post
• If walking isn’t possible, come to the start or finish for visibility
• Wear something bright — Lillia’s Light — so we’re easy to spot

Why We’re Doing This

People with rare, aggressive forms of MND are being left waiting while time and function are lost.
Families are forced to push, chase, and fight — when they should be supported.

Who cares if one more light goes out?
We do.

Accessibility & Safety

Routes are largely accessible but may change due to weather or unforeseen circumstances. Participation is voluntary and at your own risk. This is a community-led walk, not a managed event — please take responsibility for your own safety, mobility, and support needs.

If you want to join, comment “I’m in” and the day you can do.
Day 1 and Day 6 are the easiest points to join — but every step matters.

Because one more light matters.

 

[islat]

CALL TO ACTION: Walk for Lillia — and others like her
“One More Light Walk” | 23–28 January

Largely accessible routes.
Real urgency.
Real people.

From 23–28 January, we’re walking to shine a light on SOD1 MND and the postcode lottery that delays care, treatment, and hope.

This walk is about time — because people with aggressive, rare forms of MND don’t have the luxury of waiting.

Start

Friday, 23 January | 9:00am
Southampton Hospital

A deliberate place to begin — where diagnosis happens, and where delay becomes painfully real.

The Walk

We’re using largely accessible routes, aiming for step-free, well-surfaced paths wherever possible.

You can join us for any part of the walk:
• 20 minutes
• A couple of miles
• A full day

Every person who joins makes the message louder.

Finish

Wednesday, 28 January | Westminster

We’ll finish with a meeting at Westminster with Caroline Nokes MP and Ian Byrne MP, Chair of the APPG for MND.

At the finish, we’ll cut through a length of red tape together — symbolising https://tropical-casino.com/ the need to cut through the bureaucracy and delays that are actively harming people with MND and other rare conditions.

Route & Approximate Mileage

Join us at any point — short stretches count.

Day 1 – Fri 23 Jan
Southampton Hospital → Winchester
~14 miles (halfway: Eastleigh)
Overnight: Winchester

Day 2 – Sat 24 Jan
Winchester → Basingstoke
~15 miles (halfway: Micheldever)
Overnight: Basingstoke

Day 3 – Sun 25 Jan
Basingstoke → Farnham
~17 miles (halfway: Odiham)
Overnight: Farnham

Day 4 – Mon 26 Jan
Farnham → Woking
~14 miles (halfway: Pirbright)
Overnight: Woking

Day 5 – Tues 27 Jan
Woking → Kingston upon Thames
~16 miles (halfway: Walton-on-Thames)
Overnight: Kingston upon Thames

Day 6 – Wed 28 Jan
Kingston upon Thames → Westminster
~9 miles (halfway: Putney)
Finish near Parliament

Key Days to Join

Day 1 – Friday, 23 January (9am)
Southampton Hospital → Winchester
Strong start. High visibility. Easier for people to join.

Day 6 – Wednesday, 28 January
Kingston → Westminster
Meeting at Westminster as close to 2pm as possible.
This is where the message lands — where decisions are made.

If you can only do one day, make it Day 6.

How You Can Help

• Walk with us
• Bring someone with you
• Share this post
• If walking isn’t possible, come to the start or finish for visibility
• Wear something bright — Lillia’s Light — so we’re easy to spot

Why We’re Doing This

People with rare, aggressive forms of MND are being left waiting while time and function are lost.
Families are forced to push, chase, and fight — when they should be supported.

Who cares if one more light goes out?
We do.

Accessibility & Safety

Routes are largely accessible but may change due to weather or unforeseen circumstances. Participation is voluntary and at your own risk. This is a community-led walk, not a managed event — please take responsibility for your own safety, mobility, and support needs.

If you want to join, comment “I’m in” and the day you can do.
Day 1 and Day 6 are the easiest points to join — but every step matters.

Because one more light matters.

From 23–28 January, join the “One More Light Walk” to raise awareness of SOD1 MND and the postcode lottery delaying treatment. You can walk any distance, from 20 minutes to a full day, along largely accessible routes from Southampton Hospital to Westminster. Key days are Day 1 (23 Jan, Southampton → Winchester) and Day 6 (28 Jan, Kingston → Westminster) with a meeting at Parliament. Every step counts—walk, bring someone, or show support at the start or finish to help shine a light on rare MND and push for change.

 

[OxVox]

As a reminder, Lillia and her family are planning to be at tomorrow's match as guests of the club.

The walk and the lobbying of decision makers is a powerful thing and it is hard to believe that it will not result in a favourable outcome.

Just to reiterate that as well as engaging with the walk, there are two immediate practical ways fans can help:

1. Sign the petition at https://c.org/HwW8YMDgLL asking for the treatment to be funded

2. Make a donation, if you are able, at https://www.justgiving.com/crowdfunding/lillia-jakeman