Back            Chairman's Charity


                                                                                                               

    Chairman’s Charity 2016

 

      For more information please go to: http://www.muscular-dystrophy.org 

 

With the honour of being Leicestershire Chairman, my chosen charity is the Muscular Dystrophy Campaign. This charity is very close to me and my family, and the reason for this is that I have 2 daughters that have Muscular Dystrophy.


    We have 3 daughters and it is the Eldest and the youngest with MD.  There are hundreds forms of MD and my daughters have “Limb
girdle muscular dystrophy 2B (LGMD 2B)”, this is a muscle wasting condition. It affects the main muscle mass, so legs, arms, and shoulders are affected. It is a progressive condition so in the case of my daughters they are at different stages, whereas my eldest daughter, Leanne has to use a powered wheelchair to get around, my youngest, Alice is using walking sticks to get around.

 
     MD is a genetic condition, and after research in the early days when Leanne was diagnosed it was found that my wife and I carried the rogue gene. The chances of the two of us getting together and having children with MD is millions to one, but to have 2 siblings in the same family with MD is very much higher. So my daughters are very rare, and are currently on a 3 year genetic research program. The main research is being carried out at Newcastle University Hospital, where my daughters attend every 6 months.


     The research has come on leaps and bounds from when my eldest was diagnosed when she was 18 years old. When first diagnosed we were told she had MD, but didn’t know which type. But now they can tell what type, who are carriers of the rogue gene etc.  Here is the clever bit, with genetics you get a row of genes, down the row of genes there is a rogue gene, the gene that carries the MD condition.  The research that is being carried out now is to put a blocking gene in front of the gene that carries the MD. The researchers are saying they are about 15 years away from this, but it all looks good for the future, but unfortunately with my daughters the MD is too far advanced. The great thing is with them both on the research programme they are helping for the future people being diagnosed with MD.


     That is a bit of background to my family and living with MD, and you will see my daughters coming out to see us on rallies, so they are quite happy to talk about their condition, so please don’t hesitate to come and see them and have a word, and they can tell you for themselves about their condition.

During my Chairmanship I will update the charity webpage, with events etc. and more information about the Muscular Dystrophy Campaign.

 

 

Proud parents, with Leanne on her graduation after gaining a 1st class honours in Law.
Leanne is Faculty Disability Officer ‘Technology’ at De Montfort  University.

 

 

 

September 2014

Lyndon Top 'Get-on-yer-bike' - SUCCESS!!! 

A cheque for £2,500 was presented at our  A.G.M. to Donna Young of the Motor Neurone Disease Association (MNDA) who was delighted with our fundraising efforts.

And a big 'Thank You' to all Fundraisers  was received from Phil Hodson's cousin Stewart who is a sufferer of MND.

During the event an exercise bike was positioned in full view in a stunning location, and attracted loads of attention. The time was divided into half hour slots and the less energetic of us shared a slot or two, until the whole 47 hour was filled... AMAZING. The kids and teenagers loved the opportunity to stay up late into the night, and big respect goes to those who set alarms for the graveyard shifts, that's dedication for you. It was a brilliant challenge because it enabled everybody to take part. And between us we cycled 793 miles. That's as far as John O'Groats to Newquay!!!  (Would we have made Lands End if we'd had that extra hour?). The sweepstake to guess the mileage was won exactly by Jim and Jayne Brown who have received  £117, half the money taken, with the other half going to MNDA. They subsequently donated a large proportion of it back to charity.

The 55 mile/5 Counties Challenge was started with a rousing send-off; achieved, with photos taken at every County boundary; and finished with a heroes welcome back on the field.

The 'fun' Challenge round the perimeter of Rutland Water was completed by 20 cyclists (with varying degrees of discomfort?!)

Very Very Well Done

A specially printed CERTIFICATE of ACHIEVEMENT was given to all who took part.

Phil Hodson is to be congratulated for his unwavering optimism, organisation and commitment.