HOME  |  ABOUT | KRABBE'S DISEASE | BRAIN & TISSUE BANKING | DONATE | EVENTS | CONTACT

P4KR 

PO BOX 2313

Palm Harbor, Florida 34682-2313
P4KR.Info@gmail.com 
813-591-3455

Partners For Krabbe Research recently earned the Bronze GuideStar Nonprofit Profile participation level! This leading symbol of nonprofit transparency and accountability is presented by GuideStar, the world’s largest source of nonprofit information.

Copyright © 2023 Partners For Krabbes Research

Board...

No one draws any salary for their participation with Partners For Krabbe Research (P4KR). Our board generously gives their time and talents to make this foundation a success and to change the lives of children born with Krabbe. Please take a moment to get to know our board members.

Board Members

Meet The Team

Anne Rugari

Anne attended college and received a degree in accounting.  Her life experiences have taught her the most about life.  She has known Krabbe Disease since 1986 when her second child, Nick was diagnosed at 7 months old.  After her third child, Gina, born with the same rare disease, Anne felt the desire and passion to start her own foundation with the hope of finding a cure for Krabbe Disease. Her knowledge of the disease and the challenge to make a difference for children and families affected by Krabbe have driven her to partner with as many people as possible who can support her commitment in finding a cure for Krabbe Disease.

Phil Rugari

Phil attended Western Illinois University and earned a bachelors degree in Hotel and Restaurant Management with a Minor in business management. In his tenure, he has held multiple positions in the restaurant industry including: Beverage Director, General Manager, Training General Manager and Executive Chef. Phil's strong leadership skills, business acumen and personal experiences with Krabbe make him an excellent addition to the team. 

Frank Kluesener

 Living in Cincinnati, Frank became aware of Krabbe Disease in 2009 through the friendship of Anne Rugari and her daughter Gina who was afflicted with the disease.  Frank and Gina quickly became the very of best friends. Frank who never had children of his own, took on a big brother or fatherly role model as a friend of the family. Frank introduced Gina to many first adventures throughout the next six years from adapted snow skiing, to boating and tubing on the water, to drive-in movie nights (who remembers drive-in theaters?) and so much more up to her passing away in 2015. 
Inspired by Gina’s quest to live life to the fullest, Frank believes that all children no matter their condition, should be given a chance to have a childhood that is full of hope and wonder.  It is for this that Frank has a big heart for P4KR and it’s mission.

Frank’s life long career occupation is welding and is employed by HDT Global.

Alice Murphy

Alice was born and raised in Cincinnati after her parents came over from Germany with her brother and three sisters to begin a new life after the war. She married and raised four daughters while completing her accounting degree at Mount St. Joseph College and then passed the CPA exam. Alice enjoyed sports growing up so she volunteered her time coaching soccer and volleyball while her daughters were in grade school. Alice's fundraising interests evolved largely from becoming involved in Mother of Mercy High School’s auctions. Currently Alice works part time at her daughter’s restaurant handling the accounting along with working a couple other small businesses. In Alice’s free time she has been able to get more involved with fundraising events.  She enjoys supporting Partners For Krabbe Research as the Silent Auction Chairperson.  She loves the opportunity to work alongside wonderful and dedicated people who support such a great cause!

Sandra Kluesener

Sandra San Martin (cont'd)

Sandra met Gina Rugari early in 2015, only months before Gina was called home to our heavenly Father. In this short period of time, Sandra experienced Gina’s love of life and immediately saw how she touched the lives of everyone that encountered her exuberant joy despite her circumstances.  Sandra immediately stepped up volunteering for her first fundraiser with PK4R.  Since that time Sandra has been intimately involved with PK4R. “Bringing awareness and education to rare diseases is very important in my life, as one of my daughter’s is afflicted with a rare disease. If I can give back in some special way to bring hope to families challenged with a family member with a rare disease I am happy to contribute my time and give worth to this cause.”

Sandra is a native Ohioan and was born and raised in Toledo, Ohio and a graduate of the University of Toledo. In 1977 Cincinnati became her new home where she now resides and has two adult fun loving daughters. Sandra is a tenured paralegal with Luxottica for the past twenty years. As a young adult, Sandra developed a deep passion for giving back to her community serving the needs of others and volunteering through her church, place of employment and mission work with Back2Back Ministries, making a difference in the lives of orphans around the world. Sandra believes it is about being present for just one child at a time. “I know I can’t change the entire world, but bringing a smile to a child’s face and making them feel that they are the most special child in that moment in time is what is important.”