Sunday, November 7, 2010

Thank You, Scott and PACE!

This morning, at the crack of dawn, my dear friend Susan's husband will be running in the New York City Marathon. Scott and Susan continue to serve as board members of PACE -- People Against Childhood Epilepsy -- the non-profit foundation that we founded many, many years ago, along with two other parents of children with severe seizure disorders. Our passion for finding help for children with epilepsy and our friendship has persisted for many years, despite all the literal miles between us, and while I am no longer on the board of PACE, I am proud to be an advisor and supporter of all of its efforts.

Scott is running tomorrow to raise money for PACE -- this organization works, literally, on the cutting edge, raising millions of dollars for medical research and outreach benefiting children with epilepsy and their families. With the exception of one or two employees, the organization has been and continues to be run completely by volunteers and the tenacious directors, a rare thing in the non-profit world. Nearly ALL money raised goes directly to PACE projects.

The inspiration for Scott's running and, originally, for PACE? That would be his daughter Morgan, my Sophie's first friend and seizure comrade:

Morgan, her mother Susan, Sophie and I spent many, many days and weeks together, living in a motel in La Jolla while we sought help from a renowned osteopath. Despite vast differences in personality, Susan and I shared the same raucous and often bitter sense of humor that sustained us in some of our darkest days. Susan was one of the first mothers I met who seemed almost impossibly brave and strong, and even now in some of my most sorrowful moments I know that I can trust her with them -- trust in her to understand, to cry with me, to make me laugh. And while it's hard to believe that our babies are nearing age sixteen (how in the hell did we get this far?), still plagued by seizures with little to no respite, we are blessed in family and friendship and bonded together tightly in common experience.

Please cheer Scott on if you live in New York City and happen to be watching. Visit the PACE website to learn more about epilepsy and PACE's work. Sign up for the listserv if you need support from other parents of children with epilepsy and donate if you can.

Go, Scott, Go!


  1. So inspirational, and I'm so glad you have each other!

  2. Another example of how sharing is what makes us human, what makes life bearable so often.

  3. Morgan, like Sophie, is beautiful and, also like Sophie, fortunate to have such strong and loving advocates.




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