Introducing our newest RARE Revolution columnist for our new #RARETech column
Sean is writing for RARE Revolution as our #RARETech columnist and features in our Winter 2019/20 edition, RARE Patient Partners.
Sean is a patient with Adult polyglucosan body disease (APBD). APBD is a late-onset, slowly progressive disorder affecting the central and peripheral nervous systems, presenting from the mid 40s onward.
APBD causes decreased walking ability and other symptoms, ultimately causing Sean to leave his career and focus his energies on general rare disease advocacy efforts, as well as APBD advocacy efforts in Israel, where he currently resides. After a close brush with death from a pulmonary embolism, Sean partnered with a group of other patients in Israel and founded Israel Adult Polyglucosan Body Disease, a patient advocacy organisation for APBD. Additionally, Sean is a graduate of the EURORDIS summer programme.
Before Sean was diagnosed and his health began to fail, he was a founder and an executive at a variety of international high technology companies. Sean is now channeling his tech skills in the creation of philanthropic ventures targeted to serving the rare disease community.
One of these ventures, called Rare Funding Team (www.rarefundingteam.com), matches rare disease organisations with digital marketing professionals. Sean observed that many patient organisations are fueled by passion and emotional energy but often lack financial and professional resources. Rare Funding Team provides a platform where critical partnerships can be made in areas of marketing communications, graphics, IT, management and law. Sean is open and ready to collaborate with others for the advancement of the rare disease community so watch this space…