The Newsletter of the
Ara Parseghian Medical Research Foundation
Fall 2007
Marcia Kristan Parseghian
November 21, 1988 - August 6, 2005
Poem for Marcia
Written by Ara Parseghian & Cicely Ott
Sparkling eyes - spreading such joy
Beautiful laughter - tickling our hearts
Ruby-lipped kisses - your generous gifts
Wide-open arms - so ready to love
Hugging fingers - holding on tight
Fighting spirit - so excited to live
Dancing, singing Princess - celebrating each moment
Thank you, Marcia,
for the lessons you've taught,
the love you have lived.
You are with us always.
As family, friends and supporters of the Ara Parseghian Medical Research Foundation, we all mourn the recent loss of Marcia Parseghian.
But even during our grief, Marcia's spirit, strength and determination continue to provide the inspiration that she blessed us with for years.
That incredible spirit is legendary in the Parseghian family. When Cindy was pregnant with Marcia, 4-year-old Ara, anxious to meet his sister, whispered against his mother's tummy, "Come out, little baby, and I will give you 1,000 kisses."
Marcia rushed into the world the next morning, several weeks early, eager to live and love.
She leaves a legacy of that same courage and exuberance for all of those afflicted with Niemann-Pick Type C and other cholesterol metabolism disorders.
To all of you who share her zest for life and have been touched by her ability to triumph over this devastating disease, we ask for your continued generous support in honoring that legacy.
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The Marella Family
When Andrea and Phil Marella were married, they had the same dreams as most newlyweds. They fulfilled those dreams and were blessed with four beautiful children—two girls and two boys.
Those dreams, however, were shattered several years ago. After years of medical examinations, their daughter, Dana, was diagnosed at the age of 8 with NP-C. That was in 2001. Tragically, they discovered in June 2004 their forth and youngest child, Andrew, also has NP-C.
Soon after Dana was diagnosed, the Marella’s put their extensive experience in marketing, advertising and fundraising to work and launched Dana’s Angels Research Trust (DART) to raise funds for NP-C research. Along with their many dedicated and well-connected friends and neighbors in the community of Greenwich, CT they have made quite an impact.
Most recently, the Marella’s held “An Evening with Richard Dreyfuss” on May 25 to benefit the important work with the Niemann-Pick cat colony at the University of Pennsylvania’s Veterinary School. Proceeds from the event matched funds from APMRF for this co-funded project.
The event was tremendously successful thanks to the hard work and creativity of the Marella’s and their talented committee. Frank and Kathie Lee Gifford were emcees for the evening that included a reception, silent and live auction, and entertainment.
The Marella’s and Notre Dame honored Cindy and Mike Parseghian during the program for their eleven years of dedication on behalf of all Niemann-Pick families. They were presented the University of Notre Dame Distinguished Alumni Award by Regis and Joy Philbin who are friends of the Parseghians.
A touching moment during the evening’s festivities was when Dana Marella and Marcia Parseghian met for the first time. Although both were limited due to the ravages of the disease, they held each other’s hand. In their own special way…they knew they shared a common bond.
Andrea Marella and Cindy Parseghian met again three weeks later in New York where they appeared together on NBC’s Today Show to share their feelings as mothers of NP-C children.
Our sincere thanks to Phil and Andrea Marella for the tremendous amount of time and energy they have dedicated to the fight against NP-C…and the remarkable love they have shown to their own children and all children and families afflicted with Niemann-Pick.
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"...an amazing team of researchers"
“I have been to Gordon Conferences for three days and didn’t hear the level of research I heard this morning. You’ve put together an amazing team of researchers.”
This remark was made by William Balch to Cindy and Mike Parseghian at the conclusion of the June 2005 Scientific Conference on Niemann-Pick Type C Disease sponsored and hosted by the APMRF. Dr. Balch is a professor at The Scripps Research Institute in La Jolla, CA and also a member of the APMRF’s Scientific Advisory Board (SAB).
This feeling of elation was shared by many of the more than 75 researchers from around the world who came together to learn and share in hopes of finding a treatment and cure for Niemann-Pick Type C disease as quickly as possible.
More than 20 scientific presentations were given and a poster session held during the 2-day conference. The schedule was paced so that adequate time was available for the many questions and suggestions following each presentation.
“The more we know about the components involved in NP-C, the closer we’ll be to finding a treatment,” said Dr. Matthew Scott from Stanford University and also an SAB member. Dr. Scott went on to state, “The Parseghian Foundation has done as much with $15 million in research funding as major foundations have done with ½ billion dollars…and they are no further along.”
The SAB met following the conference to discuss their recommendations on 30 new grant applications that were submitted to the APMRF in April. After considerable debate, 13 of the grants were approved for $2.5 million in funding.
Please visit the APMRF website at www.parseghian.org to read a lay summary of each of the presentations given at the 2005 Scientific Conference.
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Heartfelt Thanks ...
“Fiesta Fantastica” was a befitting name for a wonderful event held on May 13 at Tucson’s premier shopping center, La Encantada. More than 650 Tucsonans enjoyed the evening festivities including delicious food and beverages donated by area restaurants and resorts, colorful decorations and lively music. Co-sponsored by Tucson Lifestyle home & garden the event benefited the APMRF.
In his continuing generous support of the many Tucson charities, Jim Click, a major automotive dealer and dear friend of the APMRF, donated a 2005 Hyundai Tucson and additional fabulous prizes for a Charity Raffle. Each charity kept the proceeds from their own ticket sales and the Parseghian Foundation was one of the top sellers. Our sincere thanks to Jim Click for his incredible, tireless support of the work of the Ara Parseghian Medical Research Foundation.
The 10th Anniversary “One More Victory, Ara!” Celebrity Weekend Presented by University Medical Center was a huge success. Held at The Westin La Paloma Resort & Spa on April 29-30, 2005 the event netted more than $550,000 for NP-C research. Our sincere thanks to our title sponsor, UMC, as well as to Lisa Frank, Precision Toyota of Tucson, Jim Click Automotive Team, Bon Voyage Travel, Wells Fargo and La Encantada.
Marcia Parseghian had many friends at Catalina Foothills High School in Tucson where she was a student. The Student Council decided to sponsor a “One More Victory, Ara! 5K Walk/Fun Run” and give the proceeds to the APMRF in honor of Marcia. Through sponsorships and the more than 400 participants raising pledges, the first annual event held in late April garnered more than $15,000 for research. Marcia led off the race in her specially adapted bicycle escorted by her many friends. It was a very special day for everyone involved.
The APMRF has been designated as the permanent beneficiary of the annual Pebble Beach Coaches Classic held each spring at Pebble Beach in California. For the second year in a row coaches from across the US have honored their fellow coach, Ara Parseghian, for the dedication he and the Parseghian family have shown in the fight against NP-C disease. Our heartfelt thanks to the Pebble Beach Coaches Classic and all of the coaches and their guests for their support and generosity.
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Those Who Care...Family ties forge community connections
When Erin Eckles and Amara Parseghian decided to dedicate a high school service project to the APMRF, they had no idea it would take on a life of its own, snowballing into a community cause.
“I had no idea the community would respond the way it did. The whole school caught onto the idea. To have people be so supportive and want to learn more about the disease and how the research supports children was amazing,” said Erin.
They are following following in the footsteps of their generous families who have been very supportive of the Foundation.
They created a unique opportunity to contribute through an annual Lenten project at Notre Dame Academy, their all-girls college preparatory school in Toledo. Their idea for a coin competition/penny drive among all four grade levels quickly ballooned into “Skate for a Cure,” a skating party and raffle at Ohio Skate, a local rink which offered its facility rent-free.
Notre Dame Academy students and faculty rallied to contribute a fabulous array of raffle prizes, ranging from an IPOD to sporting event tickets.
Students from local Catholic high schools and their guests joined in the festivities, helping the girls raise more than $1,900 for the Foundation.
Amara, who is now a freshman at St. Mary’s College in South Bend, said they were honored to assist with such a compelling cause. “I am so impressed with the way Mike and Cindy put together the Foundation and with the progress it has made in research. They have brought awareness to the public so NP-C is not just an unknown disease. People understand the severity and know they need to get involved and help out,” she said.
Both girls are looking forward to seeing the tradition of giving continue long after Erin graduates in 2006. “I am grateful Amara and I could start this and hopefully we can keep it going for many years to come,” said Erin.
Kudos to Amara, Erin, the entire faculty, staff and student body at Notre Dame Academy and the community of Toledo for their gift in the ongoing battle for life.
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