MPS Society

The MPS Society provides support to families affected by rare genetic conditions. They raise money and awareness of these conditions through fundraising, information, research and support.

Mucopolysaccharide (MPS) diseases are a family of rare, life limiting storage disorders that can affect both children and adults.

Mucopolysaccharides are long chains of sugar molecules used in the building of bones, cartilage, skin, tendons and many other tissues in the body.

Usually there is a continuous recycling process of building new mucopolysaccharides and breaking down old ones.

For people with MPS diseases there is not enough of a particular enzyme to break down used mucopolysaccharides which means they build up and store in the cells in the body which causes progressive damage.

They are numerous different types of the disease all relating to lack of certain enzymes in the body.

Chief Executive Bob Stevens talks us through the disease, its treatments and what the Charity gets up to.

• 
  What is MPS

• 
  Faulty DNA

• 
  How Does it Effect You

• 
  How Long has the Charity been set up

• 
  Lots of Different Conditions and Symptoms

• 
  Both Sons Live with MPS

• 
  Is it Hereditary

• 
  No Cure But Treatments are Available

• 
  Very Rare Disease

• 
  He Knows What Parents are Going Through

• 
  Services and Support offered

• 
  Who they Support

• 
  Being a Rare Disease Hard to Raise Funds

• 
  Volunteers Needed

• 
  How They Raise Funds

• 
  Wood of Remembrance and Hope

The disease is inherited when both parents carry the same affected gene and each pass this same affected gene to their child.

There is currently no cure, however, there are effective treatments that are proven to slow the progression of disease, consisting  largely of Enzyme Replacement Technology and  Stem Cell Transplantation.

Symptoms usually become apparent between three and six years of age.

Life expectancy for a person with MSP varies according to the severity of the mutations.

People with the mildest form may have a reasonably normal lifespan, those with moderate form  may live to teenage or early adulthood,

but the most severe form,  may allow a lifespan that is rarely longer than 10 years.

• 
  Adviza

  Adviza is a charity for all young people and adults to help them make better decisions that enable them to progress in learning and work and achieve their full potential, in Berkshire, Buckinghamshire and Oxfordshire.

• 
  Bucks Radio Toy Appeal

  The Bucks Radio Toy Appeal is over, and we want to say a massive THANK YOU to everyone who has donated.

• 
  WheelPower

  WheelPower is the national charity for Wheelchair Sport in the United Kingdom. Based at the birthplace of the Paralympics in Stoke Mandeville.

• 
  Thomley

  Disabled people don’t have the same opportunities as their non-disabled peers to engage in activities that will help them attain the life skills they need in making the transition into adulthood.

• 
  Animal Antiks

  Based at Manor Farm in North Marston, Animal Antiks has an aim to always help support and create a diverse group of people with various needs, provide a safe and calm environment in which each individual can learn and grow.

• 
  Hearing Dogs For Deaf People

  Hearing Dogs For Deaf People train dogs to alert deaf people to important and life-saving sounds they would otherwise miss.

• 
  MPS Society

  The MPS Society provides support to families affected by rare genetic conditions. They raise money and awareness of these conditions through fundraising, information, research and support.

• 
  Previous Charities promoted on Bucks Radio

  Over 2021 Bucks Radio have promoted a number of local charities via our news bulletins and in our Breakfast Show.

• 
  Against Breast Cancer

  Against Breast Cancer funds pioneering research into new treatments, tools for earlier diagnosis and advice to reduce the risk of recurrence and secondary spread.

• 
  Heart Of Bucks

  Heart of Bucks is the community foundation for Buckinghamshire; a funding organisation awarding grants and loans to support essential local charities and community groups.

• 
  Stoke Mandeville Spinal Research

  Stoke Mandeville Spinal Research (SMSR) funds cutting edge medical research into these complications, helping people achieve greater independence, and enabling them to engage more freely in education, work, hobbies, social activities, and family life.

• 
  Nightingale's Rainbow

  Nightingale’s Rainbow is being built on the site of Stoke Mandeville Hospital to celebrate the resilience and community spirit of Buckinghamshire through the Covid-19 pandemic.

• 
  BucksVision

  BucksVision is the local charity supporting people with sight loss across Buckinghamshire and Milton Keynes. They offer a wide range of services delivered by our small, dedicated staff team and fantastic team of volunteers working across the area.

• 
  Calibre Audio

  Calibre Audio believe that everyone deserves to lose themselves in a good book and their audiobook services can be accessed to suit every individual's needs.

• 
  Chiltern MS Centre

  By providing the treatment, tools, knowledge and a community of health professionals and peers, we empower people living with multiple sclerosis to thrive.

• 
  Heart of Bucks

  Heart of Bucks is the community foundation for Buckinghamshire; a funding organisation awarding grants and loans to support essential local charities and community groups.

• 
  Previous Charities promoted on Bucks Radio

  Over 2021 Bucks Radio have promoted a number of local charities via our news bulletins and in our Breakfast Show.