We are always looking for ways to explore working in partnership with people and organisations that have an interest in Ks, whether this is in the UK or internationally. We’re particularly keen to work with those who are passionate about improving the day to day lives for the individual and their families.
Support, education and awareness will always be our number one goal.
Further Inform Neurogenetic Disorders (FIND) is a website created by the Cerebra Centre for Neurodevelopmental disorders and researchers from the University of Birmingham. Prof. Chris Oliver and a team of researchers attended the 2015 Kleefstra syndrome conference in order to begin research and gain a better understanding of this rare syndrome.
We are delighted to be able to continue our work with FIND and are looking forward to the Kleefstra syndrome resources they are developing for their website.
Unique’s mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.
We began working with Unique in 2008 to develop the Kleefstra syndrome community. In 2009 Unique organised the first Ks gathering and produced an information leaflet on the syndrome. We continue to have regular contact with the team at Unique in order to support families and develop information.
Cindy-Jo Morison (HCPC registered Music Therapist)
Cindy became involved with our organisation in 2014 when she started as Music Therapist to Leah (Ks). Since then Cindy has been involved in the UK conferences and offered advice to families interested in Music therapy for their child. Cindy will be a regular attendee at our future events.
Music therapy is an interactive, primarily non-verbal intervention. The purpose of music therapy is to encourage the individual to explore and enjoy the creative process of making music. It provides a process through which clients can express themselves, become aware of their feelings and interact more easily.
Cindy can be contacted direct via email – firstname.lastname@example.org
Page updated: 15-05-2017