Ara Parseghian Medical Research Foundation

Join us in the Fight Against Niemann-Pick Type C Disease


Newsletter - A Goal for Life

Spring 2005

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The Newsletter of the
Ara Parseghian Medical Research Foundation
Spring 2005


Coach's Corner

Dear Friends,

Ara ParseghianThis year, our tenth, marks a milestone for the Ara Parseghian Medical Research Foundation. We’ll be celebrating our decade of medical research progress at our 10th Anniversary “One More Victory, Ara!” Celebrity Golf and Gala Weekend on April 29 and 30.

I view this 10th Anniversary as a true triumph—a testament not only to the spirit and strength of my grandchildren and all other victims of Niemann-Pick Type C and their families, but to the character and heart of the hundreds of volunteers who have contributed countless hours to facilitate this great event over the past decade.

I want to take this opportunity to pay tribute to each of these generous volunteers and to the dedicated, visionary sponsors who have embraced our Goal for Life. For ten years, University Medical Center has been our title sponsor. Bon Voyage Travel and The Westin La Paloma Resort and Spa in Tucson have also offered their unqualified support in our battle against NP-C since the inception of the event.

The Jim Click Automotive Team, Precision Toyota of Tucson and Lisa Frank have played first string for the APMRF; more recently Wells Fargo and La Encantada have also become key members of our team.

The Foundation’s signature event would not have attained success without the celebrities and sports legends who have rallied around the cause. Our heartfelt thanks go out to Joe Garagiola, Amy Grant and Vince Gill, Chicago, and Regis and Joy Philbin, just to name a few. Year after year, these caring friends and hundreds of other actors, athletes, comedians, personalities and sports greats have offered their time and talent to further our fight.

Finally, like the APMRF itself, “One More Victory, Ara!” is only possible because of you. Your support, your prayers and your presence have given us the courage and resolution to face our toughest opponent. You have made it possible to isolate the NP-C gene, establish a National NP-C Carrier Testing Center and fund research that has ramifications not only for neurodegen-erative diseases, but also for Alzheimer’s, heart disease and other cholesterol metabolism disorders.

I commend all of you for turning the tragedy of NP-C into a triumph. As every coach knows, the game is won when you cross the goal line, but victory is achieved on the trip down the field.


Coach Ara Parseghian

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A Decade of Hope

Ten years is a landmark for any charitable organization. With more than 1.4 million non-profits vying for support nationwide, reaching the decade mark is a true accomplishment. Competition can be especially challenging for the 4,000 medical research foundations across the country: the Ara Parseghian Medical Research Foundation utilizes organization, volunteer savvy, and an unprecedented collaborative effort on the part of individual scientists to make the most of every research dollar. In fact 94 percent of all donations are funneled directly toward research.

The importance of foundations such as the APMRF can’t be overstated: privately-funded medical research along with private-corporate and private-public partnerships are making a vital impact on innovative treatments and therapies that directly affect quality of life for millions of people around the world. Visionary medical research will continue to provide our country with cutting-edge health care throughout the 21st Century, and the APMRF is proud to be part of that great tradition.

The following timeline helps to put into perspective all that the Foundation has accomplished in its first ten years:

Michael, Marcia and Christa Parseghian diagnosed with Niemann-Pick Type C disease.
October—Launching of the Ara Parseghian Medical Research Foundation

January—100 couples attend first fundraising “Friends Dinner”
February–First Scientific Advisory Board meeting
March—First NP-C Research Lab funded at University of Arizona
June—Foundation raises first $1 million

April—500 attend first “One More Victory, Ara!” Celebrity Golf and Gala

March—Michael Parseghian dies
June—NPC1 Gene isolated

16 NP-C Research Labs funded
June—APMRF-funded NP-C Genetic Counseling and Carrier Testing Center launched at Mayo Clinic

October— APMRF co-sponsors and co-hosts first ever International Conference on Niemann-Pick Type C Disease in Bethesda, MD

APMRF reaches $10 million fundraising mark

22 NP-C Research Labs funded
August– APMRF hosts 9th annual Niemann-Pick Family Conference attended by 150 NP-C family members
October– Christa Marie Parseghian passes away

APMRF reaches $15 million mark in fundraising
First NP-C clinical drug trial commences

26 Research Labs being funded
May—APMRF sponsors and hosts 2nd International Conference on NP-C Disease with more than 150 in attendance from around the world

APMRF reaches $20 million mark in fundraising

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Jonathan Jacoby - "NP-C Dad"

In his 51 years of life, Jonathan Jacoby has had many titles…son, brother, father, husband, executive director, organizational consultant, fundraising professional. It was in December 2002 that he assumed another title, that of “NP-C Dad.”

This was when he and his wife, Donna, were told by doctors at Cedars-Sinai Hospital in Los Angeles that their month-old son, Joshua, had a metabolic storage disease, which they would soon learn was Niemann-Pick Type C.

As with any father who is told his child has a fatal disease, emotions flooded over him. Anger, disbelief, sadness, grief, despair—each tore at his heart.

And yet, as with many of his relatives who survived the Holocaust in Europe, his fighting spirit came forth. Ever since, Jonathan Jacoby has immersed himself in learning all that he can about NP-C disease, coming to Tucson to meet with Cindy Parseghian, meeting leading NP-C researchers around the country, raising considerable funds for research, encouraging drug development, and serving as a Associate Member of the APMRF National Board of Directors.

Professionally Jonathan is the Executive Director of an organization based in New York working toward peace in Israel and the Middle East. He has a son, Jesse, who is a senior in high school from a former marriage.

“NP-C Dad” is a title no father wishes he had. However, Jonathan Jacoby knows the reality of the genetic disease facing his little two-year-old son, Joshua. And, he knows the only hope to save Joshua’s life is through medical research.

Thankfully Joshua is showing no symptoms and is a regular, active little boy. This is how Jonathan wants him to remain.

With his determination, energy, creative ideas, professional experience and most of all—his intense love for his son—Jonathan Jacoby is resolute that a treatment and cure will be found for Joshua and all children living with NP-C.

The Parseghian Foundation would like to thank and honor Jonathan Jacoby for his valiant contribution to the battle against NP-C disease.

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Heartfelt Thanks

Maria Joslin cares deeply about people …and her community. As a long-time employee of Wal-Mart Store #1291 in Tucson, Arizona her caring heart has earned her the position of Community Coordinator. Having read about the Parseghian family and Foundation, it was through Maria’s recommendation that a donation was made by Wal-Mart Foundation to the APMRF. Our thanks to Joslin and Wal-Mart for their thoughtful support.

The Domier and Vought families from Southern California have instilled in their boys the import-ance of helping others. Following on the tradition of several creative fund-raising events over the years to raise funds for NP-C research in honor of their friend, Jessica Leoni, these young boys hosted a “Boat Parade for Jessica” as part of the Newport Beach Parade of Lights. They raised more than $7,500 for the APMRF through the sale of admission tickets and an onboard silent auction. It truly was a wonderful evening.

Distinctive shoppers in Tucson left the recent Worth Wear Collection clothing sale in the private home of Margie Vaughan having purchased a beautiful item of clothing and knowing they were also supporting NPC research. Kudos to Margie and her business partner, Claire Bianchi, who are sales reps for this exclusive line of women’s apparel, for their kindness in donating all proceeds.

Maria Ginnebaugh of Maui not only has a strong heart from being a marathon runner… she has a kind heart as well. Maria was one of many people who befriended Brenda Eadie and her son, Kevin, while they were spending the summer in Hawaii. In order to raise aware-ness about NPC and help Kevin and all children afflicted with NP-C, Maria ran the Maui Mara-thon in his honor. More than $2,000 was pledged to NP-C research. Mahalo, Maria!

Many people in Stoney Creek, Ontario, Canada have been touched by Taylor Beraldo, a sweet little girl who is afflicted with Niemann-Pick. When her parents and family friends decided to hold their first annual fundraising event on October 3, 2004, they named the event “Touched By Taylor.” In their letter to the Parseghian Foundation following the event the committee stated, “We are happy to support the APMRF and are enclosing a cheque in the amount of $10,000 in Canadian funds to further NP-C research.” Our sincere thanks to our friends in Canada …we are in this together.

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Those Who Care...State Farm Good Neighbors

State Farm agents Mary Ann Bate of Tucson and Brent Whitlock of Los Angeles truly live up to their company slogan…they ARE good neighbors.

Through the Good Neighbor Grant Program, the State Farm Companies Foundation awards a $500 grant on behalf of each eligible State Farm associate who volunteers a minimum of 40 hours a year to an eligible nonprofit organization. Both Mary Ann and Brent have qualified for this grant several times and the funds have been given to the APMRF.

Mary Ann has been the co-chair of our “One More Victory, Ara!” Celebrity Golf Tournament each year since the inception of the event. Some of her duties include selling corporate golf packages, securing hole-in-one sponsors, arranging for sponsor signage on the course, recruiting volunteers for the day of the tournament, hosting the awards luncheon and a myriad of other responsibilities.

Players often exclaim, “This is the best charity golf tournament anywhere.” Our thanks to Mary Ann Bate for her tireless dedication and many, many hours of volunteer service.

When little Jessica Leoni of Los Angeles was diagnosed with Niemann-Pick Type C disease, her mom’s co-workers vowed to join Lisa and her husband, Anthony, in the battle against NPC.

Leading the charge was Lisa’s boss, Brent Whitlock, a State Farm agent from Playa Del Rey, CA. Brent and his wife, Sharon, have been major sponsors of the annual “Fight For Jessica” fundraising events in Los Angeles which benefit the APMRF, and have traveled to Tucson several times to attend our “One More Victory, Ara!” event. They support the fight against NP-C in many caring ways.

Mary Ann Bate and Brent Whitlock…we’re sure glad you’re our “Good Neighbors.”

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© 2008 Ara Parseghian Medical Research Foundation
3530 E. Campo Abierto, Suite 105, Tucson, Arizona 85718-3327, Phone: (520) 577-5106 Fax: (520) 577-5212, E-Mail: