We Can Be Like The Big Foundations
(Left to Right): My nephew Shane Snow, my son Jack and my nephew Jake Peters
Since my nephew’s diagnosis of Neuromyelitis Optica (NMO) I was curious if there were any foundations representing NMO, after all, this is a rare disease just like Wolfram syndrome.
My sister sent me a link to a foundation called Guthy-Jackson Foundation. When I read about this foundation, I was a little envious of what they had accomplished in six years. They have started clinical trials, have a beautiful website, patient days and even a book written by the mother and daughter who has NMO. My initial reaction was relief for my nephew; there was network out there and in LA of all places where he lives. On the other hand, I was envious. Guthy, yes the famous Guthy-Renker infomercial founder and Jackson, the Victoria Jackson makeup line and infomercial guru are the parents of the child who was diagnosed with this disease. This power couple has an open checkbook to make what needed to happen, happen. People have to understand that in order to discover a drug to stop the progression of a disease and to find a cure, science and research has to take place and that takes millions and millions of dollars. What upsets this “mom on a mission” is that these patients are suffering and dying because of a lack of funding. My goal for 2015 is to find the right donors that can help us get this job done. It will happen, mark my words…IT WILL HAPPEN.