Ashley Rose Foundation

“Form 990 prepared and reviewed by an independent certified public accountant.”

“The foundation currently has a limited number of transactions (less than 10 per year)for donations and funding of program expenses for its fellowship program. This documentaion is avalaible to the public for inspection upon request.”

“Client Note 1 - ORGANIZATIONS MOST SIGNIFICANT ACTIVITIESTHE ASHLEY ROSE FOUNDATION WAS FORMED IN 1996 BY RAY & LINDA PITEK IN MEMORY OF THEIR DAUGHTER ASHLEY WHO WAS LOST DUE TO COMPLICATIONS RELATING TO SPINA BFIDA. THE THREEFOLD PURPOSE OF THE FOUNDATION IS 1)TO INCREASE THE PUBLIC'S AWARENESS OF SPINA BIFIDA AND THE BENEFIT OF TAKEN FOLIC ACID, 2)PROVIDE SUPPORT TO CHILDREN HAVING SPINA BIFIDA AS WELL AS TO THEIR FAMILIES, AND 3)FUND RESEARCH TOWARD THE PREVENTION OF SPINA BIFIDA. REGARDING THE FIRST TWO OBJECTIVES, THE INITIAL FOCUS OF THE FOUNDATION WAS TO SPONSOR VARIOUS ACTIVITIES WHICH RESULTED IN PROVIDING FINANCIAL SUPPORT TO CHILDREN AND THEIR FAMILIES AFFECTED BY SPINA BIFIDA. THE FOUNDATION ALSO COLLABORATED WITH THE TRI-STATE SPINA BIFIDA ASSN IN ESTABLISHING THE TELECOMMUNITY PROGRAM. THE FOUNDATION BELIEVES THAT THE INFORMATION AND SUPPORT THAT IS PROVIDED TO FAMILIES AND INDIVIDUALS WITH SPINA BILIDA THROUGH THIS PROGRAM CANNOT BE FOUND ANYWHERE ELSE IN THE REGION. IN ADDITION, THE TELEGROUP SESSIONS PROVIDE OPPORTUNITIES FOR THOSE INDIVIDUALS IN THE NY METRO AREA TO CONNECT WITH OTHERS WHO HAVE SIMILAR CONCERNS OR ISSUES. WITH RESPECT TO RESEARCH, THE FOUNDATION'S FIRST RESEARCH STUDY IN 2005 INVESTIGATED THE EFFECTIVENESS OF FOLIC ACID MOVING THROUGH THE MOTHER'S BODY INTO THAT OF THE DEVELOPING FETUS. IT HAS BEEN DEMONSTRATED THAT FOLIC ACID CAN REDUCE THE CHANCES OF HAVING A BABY AFFECTED BY SPINA BIFIDA BY AS MUCH AS 70%. IT IS CRITICAL TO LEARN WHAT PREVENTS THIS LIFE-SAVINGS B VITAMIN FROM CROSSING OVER TO THE BABY IN THE OTHER 30% OF CASES. DURING THE ENSUING EIGHT YEARS, THE FOUNDATION SPONSORED 12 SCIENTISTS WHO DEDICATED SIGNIFICANT TIME TO LEARNING ABOUT THE CAUSES OF SPINA BFIDA AND TO FINDING ITS CURE. IN 2014, THE FOUNDATION ESTABLISHED THE ASHLEY ROSE PITEK NURSE SCHOLARS FELLOWSHIP AT VILLANOVA UNIVERSITY'S COLLEGE OF NURSING. THE GOAL OF THE FELLOWSHIP IS TO SELECT NURSE PRACTITIONERS (PREFERABLY FROM THE CHILDREN'S HOSPITAL OF PHILADELPHIA) WHO WOULD ENROLL IN THE UNIVERSITY'S DOCTOR OF NURSING PRACTICE PROGRAMS. THE REQUIRED PROJECT FOR COMPLETION OF THE DOCTORAL DEGREE WOULD BE FOCUSED ON A CRITICAL ASPECT OF SPINA BIFIDA CARE THAT COULD BE APPLIED IN PRACTICE AND WHICH WOULD CONTRIBUTE TO THE IMPROVED CARE AND QUALITY OF LIFE OF THESE CHILDREN AND THEIR FAMILIES.”