Let me start by saying how happy I am to see this section come to fruition. I, as a grandparent, welcome the opportunity for all of us to share our experiences here in this forum. I must take a moment and thank Laura for allowing us on this Board and invite everyone to actively participate.
I must apologize, I would have posted much sooner, however, we just returned from our vacation - post Conference in Atlanta and presently are continuing sun and fun in Cleveland and surrounding areas. Kelly and the children are here with me now, so I am in my full glory just being Nana.
We all have shared the experience of seeing how ichthyosis has affected the lives of our grandchildren, as well as that of our children who deal with it daily on exhausting, frustrating, and sometimes frightening levels. As grandparents, some of us geographically distanced, we cannot all be hands on, but we must do whatever we can to help and hopefully someday bring effective treatments and/or cure for this disease. I, for one, have been actively fundraising for the foundation. I organized a Neighborhood Garage Sale, seeking matching corporate funds, reached out to my dearest friends as well as my co-workers, actively seeking donations. If these small efforts could be duplicated and/or expanded, we could realize our goals that much sooner. I invite all grandmothers and grandfathers to share their experiences, tap their expertise and mount a campaign to fund raise on any level to find the cure for ichthyosis. I will gladly share all my efforts, including sample letters, posters, grassroots efforts, etc. Just think, if one family can raise $100, what 1800+ families could do ?? $180,000.00 - United we stand.....edie wohlgang