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Donations and Awards

Alström syndrome UK is a charity supported by donations.

A HUGE THANK YOU to everyone who continues to support our great cause! The numbers of people being diagnosed with Alström
Syndrome is increasing so please get in touch if you would like help to arrange a fundraising event.

Thank you to the following organisations and individuals who support ASUK:

Supported By - CIN Logo

Children in Need have funded a three year transition project. The project will work with young people and their siblings and parents. By providing fun activities and one to one support with transition.

Sport England hNational Lottery and Sport England - Portrait (CMYK)ave funded family support services alongside tandems and trikes to enable families to get out and about together and enjoy cycling in their local area.

J4G logo

Jeans for Genes and Genetic Disorders UK – They have funded ‘Living with Alstrom Syndrome’ film – this can be viewed here



Thank you to Williams Holidays, who have chosen ASUK to be their charity of the year 2015. This campaign, Coach Seats for Causes will aid our work with families in Devon and Cornwall. You can learn more about Williams Holidays here

ASUK Research project – £350,000 was funded by the BIG Lottery fund

BIG Lottery LOGO

The Lottery Funding – Awards for All have also funded our PossAbility volunteering project.

The Sylvia Adams Trust who have contributed £48,722.00 towards the ASUK Asian Mentoring Scheme

The Millichope Foundation who continue to help fund our work

Brunel Manor in Torquay and Torbay Holiday Helpers Network who enabled many families to enjoy a break in Torquay in August 2013 and 2014.

The St. James’s Place Foundation – £10,000  as a contribution to our full-time Transition Coordinator

You can learn more about St. James’ Place Foundation here

Bradford Short Breaks funded £4,875.00  to enable young people from Bradford to have an adventure at the Calvert Trust in the Lake District during October half term 2013

  • David Lunt and Brian Vasey for running the Virgin London Marathon in 2015
  • Michelle Hough, her family and the St. Agnes Community who continue to offer support
  • The Lewis family for continuing to organise fundraising events
  • Nichola Martland and Stacey Chaplin – For running the London Marathon in April 2012
  • Amy Farmer for running the Bupa 10K Marathon in aid of ASUK
  • The ASUK cycle team who raised over £13,000 cycling from Torbay Hospital to Birmingham Hospital in June 2012
  • Liam Mackin for his fundraising efforts and charity awareness raising
  • Bike Club for their £6,860 grant towards ASUK Family Bike Club

There are so many Trusts, Foundations, Families and Individuals who kindly continue to raise funds for our great cause. This enables are vital work to continue and our charity to grow from strength to strength. A HUGE THANK YOU to you all, you know who you are!

Special Thanks

We would like to thank all those who have helped us:

  • Phil Pell of Carma Creative for creating the look of this site alongside Bruce Pell for designing the newsletters and promotional materials
  • Hearfirst who provide excellent awareness training

Special Recognition

We would like to give special recognition and thanks to the following individuals and organisations for dedicating over 15 years hard work to the charity.

  • Kay and John Parkinson
    Without their unstinting efforts, Alström Syndrome UK would not exist, let alone be providing health and social care at such an exceptionally high level.
  • Birmingham Children’s Hospital
    For the dedicated care of Alström Syndrome patients and for establishing the World’s first multi-disciplinary clinics for children.
  • The Queen Elizabeth Hospital, Birmingham
    For the dedicated care of Adult patients who are affected by Alstrom Syndrome through the multi-disciplinary clinics
  • Torbay Hospital
    For the dedicated care of Alström Syndrome patients and for establishing the World’s first multi-disciplinary clinics for adults and passing on their experience to the Queen Elizabeth Hospital who are now facilitating the clinics

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Media Reviewed: August 2015
Next Review: August 2017