CDKL5 UK

CDKL5UK is a UK-based charity that has been set up to raise awareness and funds for the global CDKL5 research effort.

CDKL5 UK
Founded	2012 (2012)
Founder	Carol-Anne Partridge
Type	Charitable organisation
Registration no.	England and Wales: 1149099
Focus	CDKL5
Location	Yeovil
Coordinates	50°56′31″N 2°38′00″W / 50.942061°N 2.6333079999999427°W / 50.942061; -2.6333079999999427
Area served	United Kingdom
Owner	Carol-Anne Partridge
Key people	Carol-Anne Partridge (Chair), Adrian Partridge (Secretary), Martyn Newey (Scientific Advisory Group Co-ordinator), Nico Hansen (Ambassador)
Revenue	£23.7 thousand (2014)^[1]
Mission	Raise awareness and vital funds for the global CDKL5 research effort.
Website	www.curecdkl5.org

About CDKL5 UK

Mission

Money raised for CDKL5 UK will be put towards key aims which are to promote relief, care and services to promote health, for persons suffering from and affected by CDKL5, in particular by:

Funding research worldwide for treating the symptoms, including epilepsy, and research into the genetic cause of CDKL5 and disseminating or publishing the useful results of such research for the benefit of the public.
Supporting participation into clinical trials relevant to treating the symptoms of, or development of a cure for, CDKL5, or participation in clinical trials for similar Rett-Like disorders and Rett Syndrome.
Raising public awareness of CDKL5 and promoting a greater understanding of the condition within the general public and the medical and social professions.

Scientific Advisory Group

CDKL5 UK is committed to supporting research into the CDKL5 Disorder through the awarding of research grants from charitable funds raised with a hope to continuing support for both current and future projects.^[2] The Scientific Advisory Group advises the CDKL5 UK Board on research proposals, and consists of individuals with a wide variety of experience and expertise.

Groups & Alliances

Rett Disorders Alliance

CDKL5 joined the Rett Disorders Alliance in July 2015^[3] in an aim to collaborate on shaping a more positive future for people with Rett and Rett-like Disorders in the UK.

CDKL5 Europe

CDKL5 Europe is a group of patient organisations and family contacts, to support families and research for those living with CDKL5 in Europe.

Grants

MiaMed Inc

CDKL5 provided an un-disclosed sum to MiaMed Inc, a company founded to provide ongoing funding and direct the protein’s development. MiaMed Inc's projects are focused on understanding the best dosing regimen as well as the tolerability and toxicity of injecting CDKL5.^[4]

Financial Awards

Big Lottery Fund

CDKL5 were awarded £6,520 to develop their website and information materials, to raise awareness of the CDKL5 condition.^[5]

References

External links

Wikimedia Commons has media related to CDKL5 UK.

This article is issued from Wikipedia - version of the Friday, February 19, 2016. The text is available under the Creative Commons Attribution/Share Alike but additional terms may apply for the media files.