We currently have the following opportunities available. Due to the new and small nature of our organisation, we currently only have volunteer positions available.
Interested applicants should email the CEO Laura Hattersley at email@example.com
Volunteer genetics advisor
We are requiring a geneticist to join our team to help our rare disease community. CASK is an ultra-rare condition that causes two neurological conditions – XL-ID with or without nystagmus and MICPCH. These diseases are generally caused by a de novo mutation but there are cases of inheritance and mosaicism. CASK is an X-linked disorder with both sexes being affected. CASK has a spectrum of phenotypes and there is little understanding of how mutations affect outcome. It is likely that skewing plays a significant part in severity. Our community requires a geneticist or genetic counsellor to help families understand their diagnoses. Within our foundation we have knowledge and understanding of the more common and typical genetic reports. We are therefore seeking advice for the more complex and unusual reports.
Ensure the entries on genetics and inheritance are accurate on our website www.caskresearch.org.
Expand our genetics section on our website to help explain the rarer inherited forms of CASK.
Read CASK genetic reports, and explain the more unusual diagnoses that are related to the inherited forms or milder forms of CASK.
The position would suit a genetic counsellor or a geneticist
Proof reading the website pages will take approximately 2-3 hours.
Helping to compile a number of short sections on genetics – approximately a day’s work.
Advising on genetics reports: There are 23 CASK diagnoses in the UK and 230 globally, with the majority being of de novo origin and with straight forward genetics reports. We therefore estimate that there will only be a few individuals a year that will require clarification of their genetics report.
CASK Research Foundation is seeking a scientist to advise the CEO. We are requiring someone with a background in scientific research, particularly someone who is familiar with mouse models and the field of gene technology. No experience or knowledge of CASK gene mutations is necessary. A passion for or background in rare disease is preferable but not essential. This is the perfect role for someone working in industry or academia seeking to fulfill their corporate social responsibility by helping a new rare disease charity establish itself.
To assist the CEO by providing scientific advice to ensure an enhanced understanding of the current position of CASK published research
To have informal discussions in order to generate ideas for future research goals.
This position would suit someone currently working in academic research or in the pharmaceutical industry.
Approximately a few hours a month. The scientific advisor would be expected to reply to emails from the CEO seeking advice in addition to bi-monthly zoom meetings.
Volunteer Social Media assistant
We are looking for a creative and enthusiastic person to help with our social media to really get our cause out there and bring in new supporters and sponsors. Your knowledge, skills and vision will be the driving force of our social media posts and campaigns, helping to highlight the amazing work the charity is doing to drive forward scientific and medical research. This position is open to professionals as well as students requiring relevant work experience for a rewarding cause.
Using you knowledge and skills in social media management and marketing, you will help our founder Laura to grow our impact on social media platforms including Facebook, Instagram, Twitter and LinkedIn. You will create simple but eye-catching written content as well as visual content in order to reach more supporters.
We require someone creative and enthusiastic who can continue the work we have begun, maintain our brand image whilst also moving it forward and improving our social media presence. Experience in managing social media and and designing post graphics and content is a necessity, but does not need to have been in a professional context. Knowledge of the different social media platforms is essential.
This role is extremely flexible but will probably require two-three hours a week if the individual is experienced in creating content.
Read more about our organisation here, to find out why your help and support is needed and the difference your volunteering can make to our community.