Director Patient and Carepartner Advocacy - New York


: $192,290.00 - $192,290.00 /year *

Employment Type

: Full-Time


: Executive Management

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Cure PSP has engaged Kiwi Partners to conduct an important search for a Patient and Carepartner Advocacy Director.

About CurePSP:

CurePSP is leading the fight against prime-of-life neurodegenerative disorders with a strong focus on progressive supranuclear palsy and corticobasal degeneration through advocacy and research. CurePSP s mission focuses on patient and family support and advocacy, education, and awareness of laypersons and clinicians, and research funding and dissemination of scientific knowledge among scientists.

CurePSP is based out of a co-working environment in New York City that is driven by a professional close-knit group of individuals working seamlessly to carry out the core mission. The team is customer service focused and works collaboratively with other team members to complete projects efficiently. At its core, CurePSP values the importance of work-life balance and fosters career development of team members.


Being diagnosed with an incurable prime of life brain disease is a trying time for patients, their loved ones and caretakers. The primary role of the Director of Patient & Carepartner Advocacy is to provide much-needed care and support to those deeply affected. The Director will focus their efforts on developing innovative and effective programs and to expand CurePSP s volunteer ever-growing network of highly supportive group leaders and peer group supporters.

Collaboration is a key factor in CurePSP s success, the Director will work with senior leadership, team members, and important partners to coordinate program improvements and organizing family conferences, professional educational days, carepartner retreats, and related events.

The Director will also participate in support group and volunteer meetings to educate patients, families, and healthcare professionals through inspiring public speaking engagements to further the mission of CurePSP.

The ideal candidate will have a positive, "can-do" enthusiastic attitude, a clear and confident sense of style, practice innovative thinking and be flexible, collaborative, and team-oriented. This person will possess a high level of compassion and empathy towards those going through a difficult time in their lives. This person must be able to motivate and comfortable leading varying groups of people.This position reports to the President of CurePSP, David Kemp.


  • Develop essential key partnerships within academia, biotech, pharma, government, foundations and the philanthropic community to accelerate research and therapeutic developments.
  • Coordinate closely with the VP of Scientific Affairs, shaping qualifications and programs for the Centers of Care.
  • Collaborate with key stakeholders including families, the VP of Scientific Affairs, Community Outreach and Resource Manager, Chair, PCA Committee, and the Mayo Clinic Brain Bank for brain donations, verifying and keeping a current list of Pathologists and Protocols to assist families with requests for donations, as well as end-of-life support.
  • Serve on the Cherie Levien Quality of Life Fund grant committee with the VP of Scientifc A?airs, Community Outreach and Resource Manager, and Chair PCA Committee to:
  • Promote the grant program and select grantee applications for quarterly awards;
  • Coordinate grant next steps with families and homecare agencies;
  • Monitor and track usage of grant awards per family;
  • Monitor and acquire feedback from grantees for committee use.
  • Manage departmental expenses per an approved budget with assistance from the CurePSP Office Manager

Key Skills and Expertise

  • Excellent written and verbal communication skills, with the ability to inspire individuals through public speaking engagement events and team meetings
  • Strategic planner and e?ective leader who takes the initiative to design and implement e?ective solutions
  • Entrepreneurial, self-Starter, and team member who readily o?ers ideas
  • Ambitious, Innovative, Creative, and Organized with a focus on careful planning
  • Interpersonal Skills that facilitate a positive experience for those who interact and interface with CurePSP

Required Qualifications:

  • Master s or PhD degree in related fields including Human Services, Community Health, Social Work, or Counseling
  • Minimum of 5 years of experience working closely with those diagnosed and their families a?ected by chronic illness or disability, in a healthcare setting or related non-profit foundation
  • Familiarity with neurodegenerative diseases program development designed to maintain and improve the quality of life for those diagnosed
  • Proven experience building programs or awareness campaigns from inception to execution
  • Leadership experience in volunteer management
  • Outstanding written and oral communication skills, inclusive of grant writing and appeals
  • 30% Travel Required visiting various support groups and volunteers across the US

CurePSP, Inc. is an equal opportunity employer. We respect and seek to empower each individual and support the diverse cultures, perspectives, skills, and experiences within our workforce.



Kiwi Partners has been retained for this search on behalf of CurePSP. Interested candidates should send their CV or resume, and a cover letter to:

Diana Gallardo, VP of HR Services Kiwi Partners

237 West 35th Street New York, NY 10001 212-###-#### ext. 169

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Associated topics: alumni, analyst, care, community, festival, market, policy, product market, solicitation, university relationship * The salary listed in the header is an estimate based on salary data for similar jobs in the same area. Salary or compensation data found in the job description is accurate.

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