We have established MSD Action Foundation & SavingDylan.com for the benefit of the wider community. We promote and support research advancements and activities that will lead to successful clinical outcomes, life expectancy and quality of life for patients suffering from Multiple Sulfatase Deficiency.
No individual will benefit from your donations: there are no paid employees and none of the funding raised will be spent on personal medical expenses for Dylan or any other individual.
When successful clinical trials are concluded, all MSD patients would benefit from the resultant treatment becoming available. Potentially all living MSD patients and all future patients would benefit from the development of a drug treatment programme for this condition.
Where will the money go?
In order to be a registered charity and obtain tax exemption, all charities, including MSD Action Foundation, must adhere to strict guidelines such as:
- Donations cannot be collected for the benefit of any individual commercial entity.
- Neither can donations benefit any individual person.
- Charities must not promote any commercial body.
To act in accordance with the above, MSD Action Foundation Board have committed to create an open and transparent international tender process to identify the group best able to carry out the required studies, research and development, and who are most likely to produce positive outcomes for MSD patients. The Board will engage professional medical advice in relation to this.
How we make decisions on funding research
The Board of MSD Action Foundation commits to seek international medical research experts to review and evaluate all of our research proposals. Each proposal will be thoroughly assessed by a minimum of three experts. Research proposals that reach the highest possible scientific standards, and show a proven track record and the potential of the research team will be recommended to the Board. The Board’s decision will be based on recommendations from these experts.