Victoria Jackson

The toughest challenge of 2010 has been watching my beautiful, amazing, 17 year old daughter Ali experience the symptoms of NMO (Neuromyelitis Optica). When she was diagnosed 2½ years ago, we began an extraordinary journey to learn more about the cause, treatment, and we pray, the cure for this rare autoimmune disease – so rare, in fact, it is classified as an “orphan” disease, about which until recently very little was known. What was known is that NMO, unlike MS, which tends to progress in severity over time, follows no predictable course. It can come on suddenly, without warning in attacks of destruction against the optic nerve and spinal cord – leading to vision loss, paralysis, and other symptoms that may be temporary, permanent, or can leave deficits behind. As heart-wrenching as it is when Ali faces an attack, her incredible resilience has taught me so much – and reminded me of my own strengths. In that context, I would say the most fulfilling accomplishment came this past November when the Guthy-Jackson Charitable Foundation (that my husband and I created in 2008) held its 3rd annual symposium. In addition to bringing together over 70 medical researchers, physicians and scientists to exchange vital findings about NMO, the symposium included one hundred NMO patients and their families. The progress that has been made in such a short time is bringing us that much closer to a cure and giving us all much to celebrate.

More Posts from Architects of Change