Our Activities:
- we publish regular newsletters updating the membership on our activities and informing members of any recent medical advances
-
in collaboration with medical advisors, we have developed a series of
publications regarding SDS; we are continuing to develop and update our
publications
(see link to Clinical
Information)
- as a registered charity, we have raised money from corporate donors and individual donors to support medical research, member services and information dissemination S (see link to Fundraising Events)
- we fund research into various aspects of SDS; a formal process is in place for scientific review of research applications (see link to Research Grants)
- we hold both social and fund raising events attended by SDS families, corporate donors, physicians and researchers; some of these events raise significant funds and all of these events foster networking, information sharing and "partnership" among all of those seeking to better the lives of people affected by SDS
- over 90% of funds raised to date have been donated to medical research; the remainder has supported member services, publications and operating costs