Getting there.... We live in Alaska so this means that I may be able to use Airline Miles. I am hoping to be able to stay a week so that I can do some visiting with some of our members that live in the area.
The plan is to Meet in the Uk in March 2015 if all goes well and have as many people from the surrounding area show up, as well as any others who can make it from around the world. We hope to rent space at a facility where families who still have children with MPEI can stay and hang out for a few days together!!! We are also planning on having some of the leading Dr's in this field there to share their findings with us. There is currently no cure for this disease and no current medication to help it. Although there have been some breakthroughs in identifying some of the genetic flaws, there has never been any foundational evidence, cause or reason for this disease that we know of yet.
Getting to meet my friends and meet other kids like my son is a dream of mine.
Will you Support Me? Will you send Me?
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