The Newsletter of the
Ara Parseghian Medical Research Foundation
This photo of our precious children dressed up for trick-or-treating on Halloween night is one of our favorites. Like all children, they were always so excited about the evening ahead…going to see friends and neighbors who welcomed them so warmly.
Parents of children living with Niemann-Pick Type C disease across America will be taking similar photos of their children this October 31…capturing heartwarming memories of their children who are still able to enjoy this festive occasion.
We continue the fight against this terrible disease so these children can continue to enjoy the fun of Halloween night with other kids—and actively celebrate all holidays and special occasions for years and years to come.
Our sincere thanks to our many friends who share this same passion with us. Please help us continue to raise funds and awareness to speed NP-C research toward a treatment and cure so children afflicted with Niemann-Pick can realize their hopes and dreams.
Cindy and Mike Parseghian
Back to top
NP-C Research Update
More than 70 scientists from around the world—experts in the fields of genetics, cell biology, neurology and other areas of science—came together in early June with a spirit of collaboration in a continuing hope to find a treatment and cure for Niemann-Pick Type C disease.
Each year the Parseghian Foundation hosts this important scientific conference in Tucson which features cutting edge presentations by researchers currently being funded by the Parseghian Foundation, as well as others. Following each presentation, a lively discussion took place among the researchers and members of the Scientific Advisory Board. Questions were answered, other were posed, suggestions were made—all in all, a healthy and vigorous discussion ensued.
This year’s conference was co-sponsored by the Office of Rare Diseases, National Institutes of Health (NIH). Our sincere thanks to Dr. Bill Pavan, a member of our Scientific Advisory Board (SAB) and long-time friend of the Parseghian Foundation, for securing this financial underwriting for the conference.
During the conference weekend the SAB deliberated many hours over 30 new grant applications. Eleven promising new projects were recommended for funding bringing the total number of labs being funded by the APMRF to 24.
We are pleased to announce that Dr. Jon Epstein and Dr. Marlene Haffner have joined our SAB. Dr. Epstein is the Chairman of the Department of Cell and Developmental Biology at the University of Pennsylvania. He also serves as the Scientific Director of the Penn Cardiovascular Institute. Dr. Epstein is an Established Investigator of the American Heart Association and directs several research projects funded by the NIH and the Department of Defense.
Dr. Marlene Haffner directed the Food and Drug Administration’s Office of Orphan Product Development (OOPD) for twenty years. During her tenure at OOPD more than 300 products were developed to treat more than 15 million rare disease patients in the US and many more worldwide. Dr. Haffner recently retired and has since become Executive Director, Global Regulatory Intelligence and Policy for Amgen, Inc., the largest biotechnology company in the world.
Back to top
We are so appreciative of the many events and projects held across the country in support of the APMRF in our quest to conquer NP-C disease. Each dollar raised brings us closer to finding a treatment and cure. Following are a few of the events that have taken place over the past months:
High school friends of Marcia Parseghian continued the legacy of her love by hosting the 3rd annual “One More Victory, Ara! 5K Walk/Fun Run” on April 28 in her memory. Presented by the Student Council of Catalina Foothills High School in Tucson, over the past three years the event has raised more than $60,000 for NP-C research.
“One More Victory, Ara!” Celebrity Weekend Presented by University Medical Center took place on May 4-5 in Tucson netting considerable dollars for NP-C research. Our sincere thanks to our title sponsor, UMC, as well as to Precision Toyota, The Jim Click Automotive Team, Bon Voyage Travel, Wells Fargo, La Encantada/Westcor and The Westin La Paloma Resort & Spa.
“Fiesta Fantastica” is a befitting name for the wonderful event held on May 18 at Tucson’s premier shopping center, La Encantada. More than 600 Tucsonans enjoyed the evening festivities including delicious food and beverages donated by area restaurants and resorts, colorful decorations, lively music and dance. The event was presented by Chapman Automotive and sponsored by Tucson Lifestyle Home & Garden along with La Encantada. Local artisans decorated more than 60 colorful piñatas, which were displayed and sold during the evening raising substantial dollars for research.
To honor their fellow coach Ara Parseghian and his work and dedication to finding a treatment for NP-C through the establishment of the APMRF, the organizers of the Pebble Beach Coaches Classic in Northern California designated the Parseghian Foundation as the recipient of their annual charity golf tournament. Coaches from around the country bring a foursome to play in the golf tournament who then made donations to the APMRF. This year’s total of $62,000 was the largest amount ever received.
The Race for Adam Foundation held their 2007 5K Run/Walk on May 20 to raise funds for research. This is one of many events organized each year by the family and friends of Adam Recke, a boy from Bethlehem, PA who has NP-C. Over 1,200 people came out in force this year netting more than $40,000. The Reckes are one of many Niemann-Pick families who are dedicated to raising funds and awareness in the fight against NP-C disease.
Dana’s Angel’s Research Trust (DART) held an auction and benefit concert featuring the band AMERICA on June 7 in Stamford, CT. Phil and Andrea Marella, parents of two children with NP-C and the founders of DART, organized and hosted the event along with many friends from their community. The evening was a great success. DART is co-funding three research projects with the APMRF.
Members of the Notre Dame Club of Milwaukee have great fun at their annual “Ara’s Outing” to benefit the APMRF each year. More importantly, they rally behind Coach Ara, and Cindy and Mike Parseghian who were the honored guests at this year’s golf tournament held on July 16. This Club is a perfect example of the caring support shown by the Notre Dame community across America since the Foundation was launched in 1994.
The Regent Beverly Wilshire Hotel in Beverly Hills, California was the beautiful location for the 2nd Annual Notre Dame Coaches’ Kickoff for Charity held on July 8. Our sincere thanks to the Notre Dame community for their support of the Ara Parseghian Medical Research Foundation, The Lou Holtz Foundation, and Hannah & Friends. All three were beneficiaries of this special evening which included a silent and live auction, entertainment and dinner.
Back to top
Many Ways to Give
The APMRF is blessed by many donors who give generously in a variety of ways including the following:
MAIL: Check or credit card information to the Foundation address in Tucson – (see top of page).
PHONE: Call the Foundation office with credit card information.
ONLINE: Visit our website at www.parseghian.org
REMIT ENVELOPES: We welcome requests to mail any number of our remit envelopes (see enclosed) to friends to share with others.
MATCHING GIFTS: Many companies offer matching gift programs to encourage employees to contribute to charitable organizations. Find out if your company will match gifts to the APMRF.
EVENTS: Organize and host a fundraising event.
AUCTION ITEMS: Give vacation packages, artwork, jewelry, sports memorabilia, etc.
GIFTS-IN-KIND: Donate printing, advertising, promotional items, office supplies, etc.
PLANNED GIVING: Arrange for gifts through bequests, life insurance, estate planning, etc.
SECURITIES: Call the Foundation account information to transfer gifts of stocks and other securities.
Thanks for your support in the fight against NP-C disease!
Back to top