November 29, 2005

The Ride for Life Family suffered two blows last week. On Monday, Patricia Tuttle passed away after a brief fight with bulbar onset ALS. Pat was a feisty and courageous woman who learned about our organization through a well known local priest, Father Frank Pizzareli. Just a few years ago Father Frank lost his brother to ALS. Pat & I communicated by email. To everyone’s surprise, Pat showed up during the last day of this year’s Ride for Life in May. Although unable to talk, Pat had no difficulty expressing her happiness about being with other patients and collectively making a difference.

She was introduced to other patients, two of whom were similar in age and disease progression. They quickly were named with affection as “the Golden Girls.” Pat continued to stay in contact with everyone. During the summer, she invited patients to a healing prayer service at a well known religious site on Long Island. I had the pleasure of meeting her wonderful family. Her daughter Debbie came in from out of state. She had a wonderful and loving family. Everyone looked forward with optimism to doing the upcoming Ride once again. Unfortunately, Pat failed quickly and had little success with her bi-pap. Already weakened by her feeding tube regime, her breathing seemed to drop overnight. Her son, Dan, wrote everyone, telling us she was failing. Within days, she was gone. The family is planning a seaside memorial in the warmer weather. Pat is gone, but her spirit remains with us as we continue her fight .

The second blow came with the passing of Mary Murphy. Mary was diagnosed barely a year ago. Again, it was bulbar onset. Like me, she was a educator and practiced her craft for forty years in the North Babylon, Long Island Schools. During the winter of last year’s term, she lost her voice and continued to teach through alternative techniques. She became a living lesson for the entire high school. Her work ethic, dedication to students and courage in face of adversity were a model for all. Upon her retirement in June, the school named its library after her. In a turn of irony, speechless Mary was asked to deliver the commencement address for the seniors. Obliging them, Mary wrote an inspiring and uplifting address which was delivered by her daughter as Mary sat at the podium. The entire audience gave her a standing ovation.

(Photo: Mary & her husband of 47 years, Dan crossing the Brooklyn Bridge)

Mary was a strong Ride supporter and spent several days with us over the ten day event. Without a doubt, one of the high moments of the entire trip was when a hundred or more of Mary’s students met the Ride as we entered the Village where she taught. The outpouring of affection by the students was incredible. As the Ride moved through the streets of Babylon, the young people chanted for a cure and Mary’s face beamed brightly.

Through a combination of activities, students and staff from her district raised a staggering $25,000. Spearheaded by her long time colleague, Barbara Brown, the students were simply amazing. Their efforts became a schoolwide campaign. At her funeral service, tearful orchestra students played music. A choral group performed several vocals in honor of their beloved teacher.

Mary and her infectious spirit will be sorely missed by this year’s Ride. Her youngest daughter, Jean Ellen, has promised to keep her Mom’s presence by joining us in her honor. Her Ride family expresses our deepest sympathies to her family. To the very end, Mary fought ALS. Even in death, she was fighting. Mary submitted her body to medical research in order to assist in unraveling the mysteries of this disease. What other testimony does one need to hear in order to know the caliber of this woman.

May God bless both of our fallen friends. May their families find peace. May their collective efforts to help Ride for Life hasten the day that a cure is found.

Let’s roll on as we ride on. The power to beat ALS is within us.

Chris Pendergast, Patient and Ride Founder.