BENEFITING: GUTHY-JACKSON CHARITABLE FOUNDATION
Since our mom's June 2009 diagnosis of Neuromyelitis Optica (NMO), she has battled long and hard to regain motion and strength in her arms, trunk, and legs. After months spent at Spaulding Rehabilitation Hospital in Boston and hundreds of physical and occupational therapy hours in Boston and Miami, we are extremely proud of the progress she has made and can't believe how strong she has become.
Since the initial scare we all had, we have learned very much about NMO. Perhaps most notably, we have learned that NMO is an "orphan" disease. Essentially, this means that since so FEW people suffer from it, there are ZERO medications approved for it by the FDA and funding for research for treatments and a cure are extremely limited.
The main charitable organization that focuses on helping NMO researchers and patients is called the Guthy-Jackson Foundation (http://www.guthyjacksonfoundation.org/). The foundation is dedicated to spreading knowledge about NMO, helping in the search for effective treatment and a cure, and sharing the latest medical information about NMO with both medical care providers and with patients.
Mom somehow got in touch with them (big surprise -- she is always doing stuff like that), and both she and our dad were invited to Los Angeles to participate in their 2010 NMO Patient Day as a result. The conference provided them with their FIRST chance to meet other NMO patients, exchange information with researchers and other patients, and form a network of communication with people who have NMO at the forefront of their minds. Both they and we were extremely moved by the invitation and deeply impacted by the experience they were able to share thanks to the Guthy-Jackson Foundation.
With the holidays around the corner, Christopher, Emily, Jonathan and I (Melissa) have decided to make a significant donation in our mom's name to the Guthy-Jackson Foundation instead of buying each other or our parents regular Christmas presents. Given the events of the past year and a half, simply put, we are trying to put together the most meaningful holiday present we could think of and we could not think of a Christmas present that mom would appreciate more.
If you would like to join us in making this donation to the Guthy-Jackson Foundation in her name -- in lieu of any other holiday gifts either for our parents or for any of us -- we absolutely encourage you to do so and greatly appreciate your support.
Feel free to call Christopher or Emily (Emily is infinitely more responsible) if you want to join us, or follow the instructions below. Of course, we will be sure you are included in the gift-giving process. Also, this is a surprise for our mom, so please please please don't mention this project to her!
Christopher, Emily, Melissa and Jonathan