Many of you may know John Howard as a poet who advocated for those diagnosed with Huntington's Disease and their families through his writing. After his own diagnosis, he committed himself to educating both himself and others about HD. He shared his journey through poetry, photographs, and self-published poetry books. He also participated in medical trials, documenting and sharing both intimate and challenging moments through his HD journey on his Facebook and YouTube page, “Mind of My Madness.” In addition, he has been a guest on several podcasts and YouTube interviews. John drew on his life experiences with his heart breaking and traumatic witnessing of his mother and sisters HD journey and the grieving of their loss. He has also watched this devil of a disease take his an aunt, uncle and cousins and now showing it’s ugly face in 3 other family members currently starting their fight. Still, he unselfishly turned all that darkness into light by devoting his time to helping, empowering, supporting, encouraging, and uplifting the HD community in every way he could, and he cherished every moment of it.

Despite his attempt to keep himself healthy and strong with diet, exercise and medical treatments, that 6’2 tall, strong and active man you see in those photos, videos etc, has been beaten down by the atrocious monster named HD to a very weakened and fragile man, who is desperately trying to fight to live as long as possible for himself and everyone he loves. As much as we have tried to prepare for this time to come, we were not prepared for it to come so soon with such rapidity. This past year, John has begun to decline pretty quickly, and in most recent weeks, he was hospitalized with seizures, aspiration pneumonia, and fractured ribs, in which he fought so hard to get better. Although he got better from pneumonia and his ribs, this hospital stay caused further faster decline in the past 3 weeks. As he continues to decline, his needs have become increasingly expensive, as he now needs 24-hour around the clock aid to complete all daily tasks for self-care. Unfortunately, his insurance doesn’t cover everything.

Of course, life doesn’t stop for the weary, and this sudden decline came at a time when we were just picking up the pieces from the company I worked for years closing, unemployment and a new job, 3 of our children going to college, our home suddenly needing urgent attention and replacements of major electrical and plumbing maintenance. When it rains, it pours!

John expressed his heartfelt wish before his health declined: he wants to stay in the comfort of his home for as long as possible before considering an assisted living care center. I deeply want to honor that wish and do everything I can to make it a reality for him. That’s why, with a sense of vulnerability, we are reaching out to you for financial support. Every contribution will go directly towards his medical aids, essential equipment, specialized nutrition, and care supplies. Your kindness can make a meaningful difference in this journey.

I wish John were well enough to express this himself, as he has always had a way with words that inspires me. However, he has reviewed and approved this message. He wants everyone to know that, no matter what you can or cannot donate, your positive thoughts and prayers hold great power. He deeply loves his family, friends, and loved ones. His connection to the HD community is also profound, and he wishes you all strength and resilience in your ongoing journey and fight, just as he continues to face his own.

Thank you for your compassion and support.