Dear Friends and relatives

My family has been battling a fatal disease for over 25 years now. This disease was introduced to my family when I married the father of my children, not knowing that he was the carrier of this fatal mutant gene that causes Huntington's Disease. This disease his life 20 years ago, and my children and I have since been relentless in our mission to eradicate this disease and make it the last generation that endures the suffering and pain that it brings to entire families and relations.  As fate would have it, all three of my children, Margie, Michael, and Marie, inherited HD from their father, with Margie and Michael now at the late stages of the disease, and Marie facing end-of-life.  These are my children as they looked seven years ago, but I couldn't stop the clock, and the disease continued to delibitate my children -  and for Marie, almost beyond hope.  There may still be hope for Margie and Michael, but we need everyone's support  to speed up research for the cure. 

Margie:  At this time, Margie is still living at home with husband and two children,  but she has difficulty walking, her speech is severely affected, and now even with swallowing. is a problem and is considered an aspiration risk.    Until recently, she has been attending  HD events, often as a speaker for patient advocacy, or to tell her story to scientists, doctors, and healthcare activists.  She is determined to do whatever she can do to speed up the cure because, as unfair and unbelievable as it may seem, Margie’s two children are now at risk for Huntington’s Disease, and the battle goes on.

 Michael: Michael, a vivacious and industrious young man with dreams of owning his own restaurant, entered his first  residential care facility three years ago, and dementia has set in.  He is wheelchair bound, and his speech in incoherent.  The sliver lining in his life, however, is that his dreams of having a restaurant are now real only in his mind.  He doesn't complain of pain or anguish - that's not his style.  But every now and then, he is not able to masquerade the sadness and loneliness in his eyes.