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Join us in the Fight Against Niemann-Pick Type C Disease |
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About the Ara Parseghian Medical Research Foundation
Donors, Sponsors and Volunteers |
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There are many stories about volunteers around the country who are helping in the fight against Niemann-Pick Type C disease in our newsletters which you will find links to on our home page. The following there are but a few of dozens of stories about dedicated volunteers. Highlights:University Medical Center Inspires Support University Medical Center (UMC) in Tucson has helped make dreams possible for the Parseghian Foundation. Shortly after Michael, Marcia and Christa Parseghian were diagnosed with NP-C and the APMRF was established, Cindy Parseghian paid a visit to Greg Pivirotto, UMC President and CEO. Cindy had an idea to host a fund-raiser in Tucson with UMC as the major sponsor. That fund-raiser would become known as “One More Victory, Ara!” Celebrity Golf Tournament and Gala Weekend. As Greg remembers, “One day Cindy came into my office and told me she had this idea and wanted UMC to be apart of it. As she talked, I realized that this was a natural fit—our research institution supporting a foundation whose goal was to find a treatment and a cure for a rare genetic disease. It is such a noble and worthwhile cause.” Since that conversation fourteen years ago, UMC has been the Title Sponsor of “One More Victory, Ara!” UMC’s sponsorship has made this the largest annual fund-raising event for the APMRF, and the second largest in Tucson. The event has netted more than $5 million for NP-C research over the years. Another key individual at UMC who has given of herself in supporting UMC’s involvement is Adaline Klemmedson, Vice President of Administrative and Corporate Relations. Adaline has been part of the original event committee and a long time friend of Cindy’s. She feels strongly about UMC’s involvement with the Parseghian foundation. “UMC is an important leader in the community and we wanted to show the community that we are supporting this cause,” she said. Adaline herself is a community leader, involved in many organizations including United Way, The Arizona Medical Alliance Association and Angel Charity for Children. She further explains her personal involvement, “I was devastated when I heard the news of Cindy and Mike’s children, so getting involved with the APMRF was the right thing to do at the right time to help a colleague and friend.” UMC’s involvement as the major event sponsor has had a profound impact on the APMRF. This tremendous show of support from a nationally respected medical institution has brought visibility to the Foundation and credibility to the cause. As a result, many businesses and individuals in Tucson have come forward and become a part of “One More Victory, Ara!” Our profound thanks to UMC, Greg and Adaline for their support of “One More Victory, Ara!” and their inspiring leadership in the battle against NP-C.
The legendary rock group Chicago and their manager, Pete Schivarelli, have consistently raised money for the battle against NP-C disease. In 1995, Chicago organized a benefit concert at Notre Dame, shortly after Michael, Marcia and Christa Parseghian were diagnosed, and the APMRF was launched. More than $100,000 were raised from this one concert…giving a huge boost to the research that could be funded. Ever since, the band has donated a portion of their tickets sales from concert tours raising more than $600,000. Pete tells of their dedication, “I told Ara we would be involved from the beginning.” They have kept their word. He continued, “I think we have brought a certain awareness to NP-C as all of our concert advertising states that a portion of the sales goes to the Parseghian Foundation.” There is a personal side to the band’s involvement: Pete played football for Coach Ara Parseghian forty-one years ago, by giving an unheralded walk-on a coveted spot on his talent-rich Notre Dame football roster. Pete Schivarelli never forgot the kind gesture. So, when he learned that Ara’s grandchildren had a rare genetic disorder, Shivarelli didn’t hesitate to help his former mentor. “Ara had the biggest influence in my life: playing football for him changed things for me,” said Pete. In 1974, after Pete became involved with Chicago, he brought the band onto the sidelines to watch the Notre Dame/Southern Cal game with Ara’s permission. More than 20 years later while riding on their tour bus, the group read a copy of People magazine with the article about the Parseghian family and NP-C. They all agreed immediately that they would do what they could to help. Peter has also contributed substantially on a personal level. Chicago performed at the “One More Victory, Ara!” Gala in 2001. Our sincere thanks to Peter and the members of the band for their incredible love and generosity.
So many generous, caring people have adopted the Ara Parseghian Medical Research Foundation and embraced the work being done in the battle against NP-C. One of the first persons Karen Sarikas met when she moved to Tucson in 1982 was Cindy Parseghian. Little did she know this would be the start of a 25-year relationship. Friendship has always been at the heart of this relationship along with working together as young professionals for four years at a Tucson business, sharing the births of each others' children, celebrating holidays and special occasions as families, and lending a hand and a lot of heart during the passing of Michael, Marcia and Christa. As a volunteer, Karen helped launch the Ara Parseghian Medical Research Foundation in 1994 and since its inception has served as our volunteer accountant. In this role Karen oversees the bookkeeping, accounting and banking aspects of the Foundation. Her upbeat, caring, thoughtful personality is always a beacon of light in the Foundation office. As a CPA, Karen commits hundreds of volunteer hours a year overseeing the fiduciary responsibilities of the APMRF. She is dedicated to ensuring that every dollar given by our generous donors is impeccably handled and utilized in the pursuit of a cure for NP-C disease. Karen Sarikas is truly a volunteer extraordinaire. Vince and Josephine Tenuto from Chicago have hosted the "Ara Parseghian Charity Golf Day" for the past nine years. This year's successful tournament took place in August at Gleneagles Country Club. Vince is also instrumental in organizing the annual Saint Joseph's Day Dedication of the Table hosted by Mayor Richard M. Daley. A donation to the APMRF is given from proceeds of this luncheon each spring. Thank you Tenutos for your kindness. Jessica Bolhack and Sunrise Drive Elementary School Students Jessica Bolhack, Alex Ricker, Anne Chiorazzi, Perri Blazer and John Bennett--all classmates and friends of Marcia Parseghian--have spent many hours raising money to fund NP-C research to help save the life of their good friend. Marcia is gone, but their dedication lives on. It has been nine years since this wonderful group of young adults graduated from Sunrise Drive Elementary School in Tucson, but in many ways their hearts are still there.Under the leadership of Jessica Bolhack, this group returned to Sunrise Drive School to share with students the important role they too can play in helping fight the disease that took the lives of the three Parseghian children. Pennies are adding up in the decorated collection buckets that have been placed in all of the classrooms. In just a few short months over $650 has been collected. As a result of the initial Sunrise Penny Drive that began 14 years ago, many of the district schools also collect pennies and to date over $80,000 has been raised. |
