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Events
"Cindy Parseghian came to me in 1994 saying, 'I will not let my children die without a fight.' She was determined to raise money to further NP-C research. I realized this was a natural fit--our research institution supporting a foundation whose goal was to find a treatment for a rare disease. It is such a noble and worthy cause." - Greg Pivirotto, University Medical Center (Tucson) President and CEO, Title Sponsor of the "One More Victory, Ara!" Celebrity Golf and Gala Weekend |
Upcoming EventsJune 22-24, 2012 - Pebble Beach Golf Weekend. 3-nights stay at The Lodge at Pebble Beach, dinner and reception June 22nd, golf at The Links at Spanish Bay on June 23rd, golf at Pebble Beach Golf Links on June 24th, and final reception and dinner on June 24th. For more information go to niemannpick.nd.edu
Recent EventsJanuary 21, 2012 - 7th annual "A Touchdown for Ty" benefit concert and silent auction was held in Las Vegas, NV. Every January the local community of family, friends, benefactors, and businesses come together to honor and support 14 year-old Ty Quandt. For more information go to www.touchdown4ty.com or call Verna Burrows at (702) 363-5443. August 6, 2011 – Hosted by the Smith Family in honor of their three children with NP-C, the fourth annual “BReaK Thru Fund Golf Outing” was held on August 6th at the Lafayette Elks Country Club in Lafayette, IN. For more information contact Trent Smith at: info@breakthrufund.org September 30, 2011 – Organized by family and friends of Ashton Friedl, the third annual “It Comes In Pink” event was held at the Children's Museum of Richmond, VA downtown location. For more information contact Kevin Currie at (804)427-5962. June 13 - July 8, 2011- “Road to Discovery - Riding for the lives of children” Join the Fight! 2,200 Miles, 26 Days, 25 Cities, 12 States, 2 Bikes, 1 Goal….A Goal for Life!Notre Dame Dean of Science Greg Crawford and wife Renate embarked on another ambitious bike ride this summer. Departing from Boston on June 13th and reaching Dallas, their final destination, on July 8th they traveled 2200 miles on the"Road to Discovery" ride to support NP-C research. Along the way they visited with and interviewed families who have been impacted by NP-C disease, and with researchers, as well as Notre Dame alumni clubs. Visit roadtodiscovery.nd.edu for updates from the road, information on ride stops and to learn about ways you can help. 2011 Scientific Conference on Niemann-Pick Type C Disease was be hosted by the Notre Dame College of Science on June 9-11, 2011. For more information contact Katerina Lichtenwalter at (574) 631-6456 or klichten@nd.edu. or go to http://niemannpick.nd.edu April 18th, 2011 - Notre Dame student Michael Dean ran in the Boston Marathon to raise awareness and funds for Niemann-Pick Type C Disease. April 9th, 2011 - "Stars on the Avenue" Tthe Pima Medical Society and its Alliance hosted an event on 6th Avenue in front of the Tucson Children's Museum from 6 to 11pm. Music, dancing, great food and more. Proceeds to benefit the APMRF and other local charities. For more information contact (520) 795-7985 or email steve5199@simplybits.net. March 26th & 27th, 2011- Notre Dame Cycling Team competition to benefit APMRF. Race took place on Sunday morning in downtown South Bend with the Start/Finish line near the College Football Hall of Fame. To support this team's efforts submit donation here. For more information contact: Joseph Magro at jmagro@nd.edu. January 22, 2011 - The 6th Annual "Touchdown for Ty" benefit concert and silent auction. This event was held in the Las Vegas area at the Horn Theater at the College of Southern Nevada, Cheyenne Campus. For more information contact: Verna Burrows roy.burrows@cox.net; Phone: (702) 363-5443 or Mary Wright at (702) 896-5077 October 16, 2010 -The University of Notre Dame Club of New York hosted the "Bookstore Basketball Tournament 2010" to raise money for the Ara Parseghian Medical Research Foundation. For more information go to www.ndnyc.org/bookstore.php September 24th & 25th, 2010 -The Annual Scientific Conference On Niemann-Pick Type C Disease at the Westin La Paloma Resort & Spa in Tucson, Arizona. Contact Susan McDonald at smcdonald@parseghian.org for more information. October 1, 2010 - The second annual "It Comes In Pink" event at the Children's Museum of Richmond, Virginia to raise funds for the Ara Parseghian Medical Research Foundation.. The event was held in honor of 8 year old Ashton Friedl of Mechanicsville, VA. For more information go to www.itcomesinpink.com or contact Kevin Currie at (804) 427-5962. August 21, 2010 - The 3rd Annual BReaK Thru Fund Golf Outing to support Niemann-Pick Type C Disease Research. This event which includes an 18 hole scramble golf tournament, lunch, dinner, and auction was held at the Lafayette Elks Country Club in West Lafayette, Indiana. Contact Trent Smith at info@breakthrufund.org for more information. August 4, 2010 - The 4th Annual "Irish Legends" Golf Tournament, dinner and auction at the Lost Dunes Golf Club in Bridgman, Michigan to benefit the Lou Holtz Foundation and the APMRF. For information contact Angela Monger at (800) 628-9922, ext. 503 July 23-24, 2010 A Kick off Dinner was held on July 23rd at the La Paloma Country Club, Tucson, AZ to celebrate the partnership with the University of Notre Dame’s Center for Rare & Neglected Diseases and the Desert to Dome Bike Ride. On July 24th, Notre Dame College of Science Dean Greg Crawford and his wife Renate will began their bicycle journey from Tucson, AZ, to South Bend, IN – 2200 miles!! The Crawfords will be making many stops along the way and visiting with ND Clubs. For more information call the Foundation (520)577-5106 or email: promano@parseghian.org or visit http://niemannpick.nd.edu/. July 12, 2010 - The Notre Dame Club of Milwaukee's 10th annual "Ara's Outing" at the Westmoor Country Club in Brookfield, Wisconsin. For information contact Tom or Terry Mulcahy at (800) 711-6132.
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