By Sister Rose Margaret Noonan, CSJ
SUN contributing writer

Mary Rose Noonan, daughter of Edward and Rosemary Noonan of Utica, shedding

has been awarded first place in the national student essay contest, sponsored by The Scleroderma Foundation. Scleroderma is a chronic, progressive autoimmune disease that can affect blood vessels, connective tissue and internal organs.
In announcing the award, Sondria Berman, communications specialist for the Scleroderma Foundation described Mary Rose’s essay, entitled “Scleroderma: A Present Marked by Progress, A Future Rooted in Hope,” as “informative in content and original and creative in its presentation.”
Mary Rose, who is completing ninth grade at Notre Dame Jr./Sr. High School, is a fourth-generation member of the Church of Our Lady of Lourdes in Utica where she is now participating in the confirmation program. In fact, her paternal great-grandparents, Edward, Sr. and Maude Kelly Noonan, were charter members of the parish when it was established in 1919, and her grandfather, Edward, Jr., transferred to the fourth grade in the new Lourdes School when it opened in 1929!
On the maternal side, Mary Rose has strong diocesan connections, too. Her grandmother, the late Kathryn Noonan, taught for 30 years in Utica Catholic schools and retired from Notre Dame High School in 1986. Her aunt, Sister Mary Rose Noonan, CSJ, also taught at Notre Dame High School for several years. In addition, the Noonans are 50-year summer parishioners at St. Mary of the Lake, Sylvan Beach, where they look forward to seeing Father Leo Wimett each year!
Mary Rose was motivated to enter the essay because her aunt, Sister Mary Rose Noonan, for whom she was named, has scleroderma, a connective-tissue disease that affects approximately 300,000 Americans. As the younger Mary Rose explains, “In 2007, my aunt took me to Philadelphia to the national conference of The Scleroderma Foundation. We had a great time in Philadelphia but, more importantly, I attended workshops on the disease and met people who were going through the same experience as my aunt was; some of them were my own age. From that trip, I became very interested in learning more about scleroderma.”
The national contest called for a student research paper which would be judged on originality and creativity and its ability to generate awareness and knowledge about scleroderma. Students from the U.S. in grades 4-12 were eligible to submit entries to the contest. Mary Rose’s paper included the research angle, along with a creative Irish blessing for those with scleroderma, a crossword puzzle of new terms and photographs she took of her aunt to show some of the disease’s symptoms. Her interview of her aunt’s physician provided a primary source.
According to Mary Rose, the whole project, which took her a few months to complete, was a wonderful educational experience.
“I learned so much about the disease of scleroderma itself and so much about the efforts that are going on to find better treatment and even to pinpoint the causes and work toward a cure. From my aunt’s experience, I already knew about many of the symptoms, the dangers and the treatments. However, during the research part of my essay, I read books and articles and interviewed my aunt’s scleroderma specialist. It brought me to a new understanding of the importance of going beyond the symptoms to learn more about what triggers the disease. Some of it fit right into my biology class!”
The younger Mary Rose also became interested in the connection between faith and health that has been the focus of many recent studies. She writes, “My aunt has an incredible attitude that comes from her faith, and I know it’s the key that has kept her going. Scleroderma has taken its toll in physical symptoms. She has lost all of her toes and all of her fingers except for one thumb. In addition, she has Barrett’s Esophagus, pulmonary hypertension, calcium deposits that break through her skin, and telangiectasias over much of her face and her hands, feet and neck.
“However, my Aunt Mary Rose’s scleroderma has not defined her life. She works as director of communications for the Sisters of St. Joseph. When her ulcers and amputations began to affect her work, she learned a voice-activated computer program to assist her in word processing, desktop publishing and design. When she lost the last of her toes, she got an orthotic with toe fillers, and now she walks without a limp. When her lips began to tighten and she developed pulmonary hypertension, she learned to play the trombone to exercise her lips and lungs. Now, my aunt plays in a musical group with 10 other Sisters of St. Joseph who joined together just to support her. So all in all, my aunt lost her fingers and toes but has never lost her spirit of hope. She is fun and funny and the best aunt anyone could have. That’s really why I entered the contest! It was my own way to honor my aunt.”
For Sister Mary Rose, her niece’s award was a thrill. “Mary Rose is a terrific niece and such a kind and thoughtful person. Her interest in people with scleroderma is just an extension of her compassionate nature. She is developing into a remarkable young woman who makes us so proud!”
As part of the award, Mary Rose will be honored at The Scleroderma Foundation’s National Education Patient Conference to be held in July in Boston. The three-day event will feature a variety of workshops and seminars, hosted by leading scleroderma researchers and medical professionals from around the world. Mary Rose can bring a guest with her to the conference and gala, so it is no surprise that there will be two Mary Rose Noonans celebrating in Boston this summer!

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