Beneficiary

ALS Center Endowment Fund

This fund was established in 2006 to support patient care in the University of Rochester Medical Center’s ALS Center.  By building a framework specifically around the needs of ALS patients, this fund will provide clinical care to ease the burden for people presently coping with ALS, and their families.

The Fund, including all gifts, is the absolute property of the University and its successors forever.  It may be invested and reinvested from time to time in such manner and in such investments, without restrictions as to kind, as the University in its uncontrolled discretion may elect.

All gifts to the Fund shall be preserved intact and principal may not be invaded for any purpose.  The income derived from the Fund may be used by the University under the terms and conditions specified below.  The Fund’s annual payout will be determined by the Board of Trustees.  As of the date of this agreement, the amount is based on 5.25% of the Fund’s average 5-year rolling market value.  Any unused portion of the income shall be transferred to the principal amount of the Fund each year.

This endowment is funded primarily through proceeds from the Peter Lawrence ALS Golf Tournament.  The payout from the Fund shall be used each year to provide care to ALS patients.  Income generated by the Fund will be administered by the Director of the ALS Center.

The term “patient care” includes a variety of activities associated with caring for ALS patients and their families.   The services reimbursed by the Fund take place during clinic days at the hospital and also at patients’ homes.

Examples of approved expenses include:

  • Physical therapy
  • Speech therapy
  • Respiratory therapy
  • Nursing care
  • Physician care
  • Other services as needed (patient specific)
  • Specific training for nurses, doctors and technicians involved in ALS care
  • Social work
  • Home visits
  • Educational materials for patients
  • Clinic space
  • Equipment
  • Palliative care
  • Community outreach

 

Examples of unauthorized expenses include:

  • Medical research
  • Bricks and mortar
  • General administrative expenses

The Director of the ALS Center will welcome input from an ALS advisory committee (currently the golf tournament board) and will provide an annual update on use of the funds for the life of the ALS Golf Tournament.  Annual reports describing the impact of each year’s payout will be sent to all interested parties.  Upon the committee’s decision to stop raising funds for this endowment, the committee, ALS Center leadership and the University of Rochester should discuss options for continued communication.

The committee will have the ability to periodically revisit the purpose of the Fund to expand or refocus the guidelines for how funds can be spent.

In the event that the Board of Trustees of the University determines that carrying out the purposes established by this Agreement is impossible, the Board of Trustees of the University may change the purposes of this Endowment Agreement in such a manner as to carry them out as closely as possible in conformity with the committee’s original intention as set forth in this Agreement.  For example, when the day arrives that a cure is found for ALS, the University will direct the fund to a project as closely resembling the original intention of providing care for patients with ALS as possible.