Hope is a delicate, beautiful thing that needs to be nurtured and taken care of; Deb sums it up in a simple, lovely way. She thinks of Simon Ibell, a man in his mid-thirties living with the syndrome who was told six times that he had less than a year to live, and tells me: “All I know is that I could not live with myself knowing that nobody was doing anything for my son.”
How can you help? If you are on the North American West Coast, you can attend the gala, and/or help advertise it in the hopes of filling up the room and raising enough funds for another couple of years of research into Hunter Syndrome. If you are anywhere in Canada, you can learn more about the Orphan Drug Policy, contact your member of Parliament and ask for the policy to be adopted in this country.
Wherever you are in the world, you could also do a fundraiser of your own. It doesn’t need to be a full-on gala; you could decide to raise awareness about little known diseases and the need to broaden medical research to include them and not only those that bring in the money for pharmaceutical companies.
If you do decide to raise funds for research into Hunter Syndrome, you could get in touch with Deb, who is a fountain of information and experience. But most importantly, the best thing you can do is to get involved in a cause of your choice. Make of Deb an inspiration for you to make a change as well, so that every single cause that has at ts heart injustice can be addressed. Then hopefully we can rest easy knowing that every individual in the world is being treated with justice. What priviledge can compare with being involved in such a process?
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