Someone recently asked me what it’s like to live with a rare, incurable chronic disease. I guess the short answer is I am still figuring it out each day.

In many ways it’s the same as anyone’s life… one day at a time, take the good with the bad, do your best, and count your blessings.

There is, however, an element of “other “that is very difficult to explain. In the case of adult onset of a disease such as I experienced, the “other “ often means a sense of loss in terms of abilities, independence, career, etc. There are still the happy memories, however, and the gratitude for having had the chance to walk, drive, play sports, work, and so much more.

When a disease or disability occurs in childhood, the impact is more profound, often robbing children of the opportunities I mentioned above. I believe that is why I felt so blessed to have worked with so many wonderful students and adults to raise money for pediatric cancer.

It’s also why I have decided to dedicate my time and energy towards a new cause… fundraising for CMT(my disease), and more specifically, for the children who have CMT.