People living with MND are being sought to become 'MND Fellows' ahead of the International Symposium on ALS /MND in Glasgow in December 2018.
The purpose of this is to ensure that people with MND have some input in meetings amongst scientists and health and social care professionals at the event. The idea first came about during conversation and networking sessions among peers at the 2016 International Symposium.
Those conversations centered around how to:
These are important goals and, while this program alone is unlikely to achieve them all, it aims to build on these ideas and give people with MND a greater voice.
The idea behind creating 'MND Fellows' is inspired by the impact that the PatientsIncluded movement has had, in addition to research that suggests efforts to include patients in scientific conferences can improve outcomes.
MND Fellows will attend meetings which are primarily aimed at the science and allied health professional communities. In addition to providing a voice on behalf of people affected by MND at the meetings, fellows will also be expected to report back to other people with MND after the meetings.
Fellows selected will be paired with a member of the selection committee, their 'Fellowship Mentor', for at least four individual preparation meetings (phone, Skype, etc) and three group meetings with the other fellows and full selection committee.
MND Fellows must be individuals with a formal diagnosis of Motor Neurone Disease from a physician and be able to present certification upon request to the Selection Committee.
Applicants will be asked to describe their progression with MND, so that the widest range of people can be sought out for the group of fellows.
This fellowship is as much about bringing the individual person with MND to the research meetings as it is about sharing that experience with the rest of the MND community afterwards. Therefore, Fellows must be able to display the ability and commitment to communicate effectively in writing via blogs, social media, etc leading up to, during and after their Fellowship.
If you'd like to apply to become an MND Fellow in 2018, or if you'd like to find out more information, click here.
Applications to become an MND Fellow close on Monday 17 September.
The program is not solely funded by any individual organisation or company. Several private individual donors have made charitable donations to cover the cost of entry fees, accommodations and other costs associated with this effort.
The donations were made to the ALS Therapy Development Institute (ALS TDI), who will manage the expenses part of this program as part of its mission. However, ALS TDI does not have control over who is selected as a Fellow nor editorial control or responsibility of the materials created by Fellows resulting from the Fellowship.
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