Registered charity
number 1146355

Trustees

Tony Levene

Hi and welcome to Duchenne Now, my name is Tony Levene and I am a Parent/Trustee of your charity.

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My Duchenne journey begun on my 30TH Birthday June 15th 2005 which was also the day my son Joey was born.  Since his diagnosis at 18months old, I have been very actively involved with the international Duchenne community. I spend countless hours on the phone to researchers, clinicians, companies, and other foundations all across the globe to ensure we are investing in high quality trials that have a clear roadmap to market.

I really believe the dream of having a viable treatment for Duchenne within the next 5 years is achievable.

We at Duchenne Now are determined to make every single penny count, cut out waste and where possible work with others to maximise research and funding opportunities.

A little about myself:


I am 37 years old living in Manchester and married to Tracy; we are blessed with 3 children Mia [10] Joey [7] and Leora (3)

I am a sales director for an I.T. hardware distribution company based in Heywood, Lancashire.

I was a trustee of Action Duchenne for 5 years till we formed Duchenne Now in March 2012.

I am available at anytime please do not hesitate to get in touch: tony@duchennenow.org  / 07970-931-272, I like you have a child with Duchenne and understand the rollercoaster ride of emotions. Together we will do all we can to achieve our dreams.

 

Paul Fitzpatrick


Hi and welcome to Duchenne Now, my name is Paul Fitzpatrick and I am a Parent/Trustee of your charity.

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I have been heavily involved in the Duchenne community ever since our son Josh was diagnosed; I am just as determined today as I ever to find viable Intermediate treatments and eventual cure for every single person living with Duchenne.

We at Duchenne Now are determined to make every single penny count, cut out waste and where possible work with others to maximise research and funding opportunities.

 

A little about myself:

I am 58 years old living in Rotherham and married to Gail; we have two children Josh [19] and Hannah [17].

I am a retired Fire Officer and before that I was in the Royal Navy.

I was also one of the first parent/Trustee’s of the Parent Project UK [now Action Duchenne] in 2001 and was Chair for many years, until we formed Duchenne Now in March 2012.

I am available at anytime please do not hesitate to get in touch: paulf@duchennenow.org. I like you have a child with Duchenne and have experienced every single emotion to go with it. We cannot give any guarantees except one: I will work tirelessly for free to cure Duchenne, I am a Dad xxx

 

Vici Richardson

I am married to Gav and have two gorgeous kids, Zak and Sian. Zak is 10 and has Duchenne and Sian is 6.


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Zak was diagnosed at 18 months, after I felt something just wasn’t right.

Like most of you, I had never really heard of Duchenne - until 29 March 2004. This was the day we had the appointment and were told Zak had Duchenne Muscular Dystrophy.

We were given some glimmer of hope, mainly in the form of exon skipping. It wasn't until a couple of years ago that we actually found out that exon skipping won't work for Zak. He has a rare duplication.

After Zak's diagnosis, like many parents, I threw myself into fundraising and campaigning. That then took on a different role in that I was employed as the first national fundraiser for a PPUK (Now Action Duchenne). As the charity developed I took on the management of a project working with young men with Duchenne as well as the development of the campaign work and the setting up of some of the early lobbies in Northern Ireland, Wales and Scotland. This has given me great experience to bring to Duchenne Now.

My current job is with a North East charity. I work with service users who receive direct payments and advise them on employing a PA and managing their budget. We also provide advice on benefits and independent living, which again gives some good knowledge and experience to bring into the Duchenne community on a practical level. I am always happy to talk to parents about benefits, social care etc.


I am a trustee of Duchenne Now because I 100% believe in the ethos.


I don't want to see anyone left behind.

Having a diagnosis of Duchenne is tough enough but to be then told that actually the majority of funding is going to research your child can't benefit from is a tough blow to take.

I worked closely with Paul in the early days of PPUK and respect his knowledge of research and his commitment to our kids. The setting up of Duchenne Now gave us as a family hope back.

I also feel strongly that in these tough financial times it is even more important to make every penny count and at Duchenne Now I can assure every one I come in contact with that every penny will go where its needed and that's to research and that's research for all.

After hearing promises for the last 9 years, I want to be a part of something that delivers on the promises and delivers in time for this generation and I can guarantee that we will give everything we have to making this happen.

I look forward to working with you all.

Support & Advice

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Supplements and medications

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Adaptations

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Educational needs and benefits

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Wheelchairs and equipment

Fundraising

Every single penny raised for Duchenne Now will go to fund Duchenne research. How will you help?  Click here for more info

Membership

Donating regularly by standing order is one of the best ways in which you can become a part of and support the work of Duchenne Now.  Click here for more info

Events

We hold plenty of events to raise money to fund research. Why not join us at the next one to show your support?  View our calendar