CURE DHDDS

CURE DHDDS is a registered charity in England, established to raise awareness, support families, and drive research into the ultra-rare DHDDS and NUS1 gene mutations. The charity holds the registration number 1202643 with the Charity Commission.

Activities and Goals

The main activities of CURE DHDDS focus on relieving the needs of those affected by DHDDS disease, supporting families impacted by these mutations, and driving research into their causes and potential treatments. This includes providing the latest information to families and health professionals, funding scientific research, and raising awareness about the condition[3].

Structure and Leadership

CURE DHDDS is run entirely by families and volunteers, with a board of trustees that includes Mel Dixon, Charlie Dixon, Penny Brogan, Louise Townley, Katie McCombe, and Victoria Allan[2]. The charity is supported by a network of volunteers, with over 125 individuals contributing to its efforts[3].

Current Efforts

In 2023, the founders of CURE DHDDS successfully established the charity after discovering their children carried DHDDS mutations. They have been instrumental in building a community of affected individuals, scientists, and researchers. The charity's efforts have grown from a small group of families to a broader network of over 70 affected families and researchers[5].

Financials

As of the financial year ending March 2024, CURE DHDDS reported a total income of £236,221 and a total expenditure of £76,983. The charity does not have any trading subsidiaries and no trustees receive remuneration from it[3].

Fundraising and Advocacy

CURE DHDDS is actively engaged in fundraising to support research into potential treatments for DHDDS mutations, aiming to raise £500,000 for creating models and initiating research with scientific partners[4]. The charity also conducts media awareness campaigns and organizes conferences to bring together scientists and families affected by the condition[5].

[1] https://www.curedhdds.org [2] https://www.curedhdds.org/about/ [3] https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5216129 [4] https://www.curedhdds.org/donate/ [5] https://www.rarebeacon.org/meet-mel-founder-of-cure-dhdds/