Kris Klenke

Background

About Kris Klenke

I am passionate about all things rare disease! I volunteer for the National MPS Society. I have helped create and implement several new family support programs; regional family picnic, continuing education & conference scholarships, family assistance, extraordinary experiences, bereavement and medical travel assistance program. I have traveled to DC to speak out for families on rare disease issues. I have participated on a parent panel, speaking about “a day in the life of a family affected by rare disease”. As well as speaking on a panel discussing the issue of newborn screening for MPS disorders. I have been on a patient/parent advisory panel to discuss the approval of ERT for MPS II patients, meeting multiple times over 2 years prior to the approval of Elaprase. My passion also includes fund-raising, raising over through the years for the National MPS Society. Hosting a walk/run, numerous bowl-a-thons, silent auctions, and other small events. As host family of 2 national conferences, I have selected the conference hotel, helped in coordinating conference speakers, child-care, family outing, entertainment and banquet meals. As time permits, I travel to the National MPS Society office and volunteer in the office doing routine office work and supporting the staff in any way I can. For nearly 19 years I was a full time caregiver. Taking care of my son’s needs; this included IEP meetings, educating school staff, doctor appointments, weekly ERT at the hospital, managing nurses, medical tests, hospital stays, palliative care coordination, guardianship issues, travel for medical needs, state medical waiver programs, etc. I loved my job, I miss my job, and most of all I miss my son! I want to continue to work for and help families who deal with rare disease in honor and memory of my son. I am always searching for new ways to reach out and help.