Sadly, Millie passed away on Monday, and while those of us who knew and cared deeply for her try to cope with this huge loss, we are in awe of Millie and all she did with her life. Millie was a dystonia advocate, working tirelessly to make sure that the dystonia community had what it needed. She went to Washington, DC and met with members of Congress to educate them about dystonia. She utilized the media to share her story so that others might better understand what dystonia is, and she worked with young people affected by dystonia to help them develop strong support networks and be educated about every aspect of dystonia. Millie was a frequent speaker at DMRF educational forums, often at her own personal health risk – pushing herself to travel so that she could participate. Millie touched everyone she met.
You could not help but be swept up in her enthusiasm and optimism. As another dystonia advocate said today upon learning of her sudden death, “I can’t imagine the world without Millie.” Nor can any of us who worked so closely with her and who were honored to call her a friend.
Our sympathies go out to her family and all who knew her. The sun shines less brightly because she is gone, but the world is a better place for her having been here, even for a short period of time.