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Newsletters & Videos
"A Goal For Life"
The Ara Parseghian Medical Research Foundation Newsletter
-World Rare Disease Day Video
We invite you to read our newsletter, "A Goal For Life", which provides quick and easy access to information about what's new at Ara Parseghian Medical Research Foundation, research updates, fundraising stories and features about NP-C patients and families.
To the left, you can view videos that include messages from Cindy Parseghian and an interview with Ara Parseghian.
We are pleased to announce a new partnership with the University of Notre Dame which will help toensure APMRF’s momentum in pursuing a treatment for Niemann Pick Type–C disease. Notre Dame has launched the Ara Parseghian Medical Research Fund which will take on the administrative functions of the APMRF including fundraising, recruiting of researchers world-wide, grant administration, marketing, interaction with other NP-C families, and hosting of the annual science conference. The Parseghian family will continue to be intimately involved with the fundraising efforts and will act as advisors to the new Fund. A great deal of attention has been focused on this transition to ensure that the work we started over 22 years ago continues advancing the field of NP-C research.
Join us in welcoming 3 new Board Members to the Scientific Advisory Board:
The 4th annual Parseghian Classic took place on June 26-29, 2015 and was an incredible event. With
the perfect combination of ocean view golf, luxurious accommodations, delicious cuisine and
excellent service – all of which was made possible with the heartfelt commitment and generosity of
all who attended. Singer, songwriter Amy Grant once again brought her musical talent and her
devotion to helping raise NP-C research funds and performed at the closing dinner. This year’s
event, with the largest turnout yet, was filled to capacity with a waiting list. We ask…. “How can this
get any better?” Well, we are going to try….and you can help by joining us next year! Mark your
Dedication...Boler-Parseghian Center for Rare & Neglected Diseases
2014 NP-C Scientific Conference Highlights
The University of Notre Dame hosted the 20th NP-C Science Conference in June, bringing researchers from around the world to discuss the progress in NP-C research. This conference was made possible by an endowment the APMRF established to ensure the continuation of this very important meeting. It is the only large meeting specifically held for NP-C researchers so they can focus their attention on conquering the disease. The attendees also help formulate the plans for the direction of the research, highlighting special areas to be investigated.
HDACi Drug Trial Expected To Start In 2014
Tremendous progress has been made to initiate a new, two-center drug trial later this year at the Mayo Clinic and NIH Clinical Center. To reach this goal a major collaborative effort is underway to determine if a histone deacetylase inhibitor (HDACi) can be used to safely treat patients with Niemann-Pick Disease, type C1 (NPC).
Hope for NP-C Patients