humans. The system needs monumental overhaul. I try to carve out time to devote to policy changes. Thankfully, there are MD/PhD’s like Dr. Emil Kakkis who have put their careers aside to devote their lives to getting the system changed in the hope that someday there will be therapeutics for the more than 6,000 rare disorders, impacting nearly 30 million Americans, the vast majority being children. Shamefully, there are only 250 rare diseases that have effective therapies today.” Hannah’s Hope Fund, the first public charity for GAN, has put Lori and her husband in touch with other families struggling with the disease.
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“It seems like every few months now a newly diagnosed family finds us,” Lori said. “In their darkest moment, they are turning to us and we are giving them hope. It is always bittersweet when a new family finds us. The bitter is obvious, but the sweet is that knowledge is power and they now have the ability to help us fund this life-saving treatment.” I asked Lori how she finds the strength to work so tirelessly for a cure. “I describe most weeks like final exams week in college…intense and not enough hours in the day. In my spare time, I read scientific papers. Honestly, I love what I am doing. I only wish it weren’t to save my own
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12/5/12 8:29 AM