Jooly's Joint: people with MS supporting each other

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ITV's Walk of Promise

Sunday 15 October 2000


ITV Year of Promise

People with multiple sclerosis ask Blair to keep his promise

This was the plan:

A group of people with multiple sclerosis (MS), their friends and families will be taking part in the ITV Walk of Promise on Sunday to remind Tony Blair of his promise to people with MS.

They will carry banners that read 'Tony Blair! Keep your promise to people with multiple sclerosis' and 'Don't ban the drugs we need', and will hand leaflets to passers-by.

Paseo Malanga

They will be accompanied along the 4-mile route from King Stairs Gardens to Bernie Spain Gardens by Paseo Malanga, the Hackney-based Cuban street band who will entertain the crowds with thundering Paseo drums and bells.

MS is a devastating life-long disease causing attacks that can leave people paralysed, blind or with other serious disabilities. It can end careers and destroy family lives.

The Prime Minister says he wants an NHS 'based on need, not ability to pay', but he is about to break this promise for people with Multiple Sclerosis, by making Beta Interferon and Glatiramer Acetate, the only drugs that can reduce the frequency and severity of frightening and unpredictable MS attacks, unavailable on the NHS.

The Government says these drugs have 'only modest benefit'. However, an MS Society survey has shown that 90% of MS specialists disagree, and would prescribe the drugs given the choice. The drugs are widely available in other countries and people using them report enormous reductions in the frequency and severity of MS attacks.

The cost of the drugs is extremely modest compared to the amount of money the Government recently spent on the Millennium Dome, but the Government has made it clear that it feels that people with MS are not worth treating, and that money is better spent on tourist attractions that few people wish to visit.

Julie Howell (29), is creator of Jooly's Joint, an award-winning, internet-based community of people with multiple sclerosis. Julie used the Internet to organise her team for Sunday's walk.

Julie said "Many of our friends could not join us on the Walk of Promise today because they are too ill to leave home. Access to these drugs may mean they will be well enough to join us next time. By banning our drugs the Government is implying that people with MS have nothing to offer. The ITV Walk of Promise gives us the opportunity to remind Tony Blair of his promise to us. We will be alerting the public to the devastation we will face if MS drugs are banned."

And the plan worked!

It was a wonderful day.
We walked 4 miles in the sunshine along the beautiful South Bank.
Paseo Malanga went down a storm - even the police told us they loved them!
We passed thousands of people, who read our placards and offered their support - some even offered money (which we politely declined!).
We handed out 300 leaftlets, raising awareness of the beta interferon crisis.
We all had a wonderful time, and will definitely do it again!!

Getting ready

Getting our JJ gear on.


All set

The band are in white, the JJ team are in green.


Paseo Malanga

Paseo Malanga - the greatest Cuban street band in the world!


Jooly and the band

Jooly and the band appeal to Tony Blair.


By the Thames

Bonhoff and family, Jooly, Kate and family march with the band.


Dancing in the street

Kate's daughters show you're never too young to get involved. The couple behind were dancing along the street!


Karen's back!

Karen - the walking placard!


By the Cutty Sark

Martin and Mark find time to take in the sights.


Having fun

The band had a great time too!


Bernie

Bernie blows his sax for people with MS.


Big Ben

There's Big Ben and the Houses of Parliament - shame Tony doesn't work on Sundays!


Jooly and Kate

Jooly and Kate walk in the sunshine.


Millennium Wheel

"I'm sure the Wheel is round here somewhere..."


Single file

Walking in time to the beat.


Handing out leaflets

Jooly handing leaflets to the crowds.


There's the finish!

"I can see the finish!!"


Tony

Cameraman Tony takes a break...
Tony singsthis man is wasted on the Web industry!


Rob

Rob receives a few tips from his daughter.


Bonhoff

Bonhoff and family did the conga for 4 miles!


Posing for the press

As we reach the end, the press appear.


Nearly there

All smiles as we see the finish line.


We did it!

We did it!!


Until next time

Time to go home...
but we'd do it all over again!!


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