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Development and Stewardship Associate


Title: Development and Stewardship Associate 

Reports to: President and CEO

Affiliations: Fundraising Team

Reporting to this position: Community Volunteers


The Development and Stewardship Associate is responsible for designing, implementing and coordinating a comprehensive development, donor relations, and stewardship program that appropriately and consistently promotes interaction with and recognition of donors at all levels. In addition, s/he will work with the President and CEO and the fundraising team to determine the best strategies for effective stewardship of donors and grow and maintain an active network of donors and supporters from within internal and external stakeholders. Must have exceptional communication skills, both written and verbal.

  • Bachelor’s degree required

  • Database experience (, Donation Platform (GiveLively), and Microsoft Office and Google Suite proficiency required

  • Experience working with high-level volunteers

  • Minimum of 3-5 years of development and stewardship success

  • Ability to work collaboratively in a mission-driven, small, hands-on team

  • Self-driven, with strong planning and organizational skills; Strong interpersonal skills across all stakeholders; Excellent written and verbal communication skills with the ability to communicate diplomatically in a diverse, multicultural, multi-stakeholder environment.


Assist the CEO and fundraising team in all aspects of fundraising and communications planning

  • Donor and Sponsor research

    • Conduct ongoing research on current and prospective donors (individuals, foundations, corporations and other organizations) to help further contributions from such donors. This involves searching public records, utilizing donor research tools, preparing profiles etc. with integrity and the highest ethical standards. Assist in finding and updating contact information on both new and existing donors

    • Lead internal processes to identify new donors and sponsors to the organization through current and newly established networks. Reach out personally to leaders in targeted networks and with current donors, sponsors, and others to assist in the identification and development of new donors and sponsors.

  • Donor and Sponsor Cultivation and Solicitation

    • Work directly with the President and CEO, development team, and board members to help cultivate a targeted and assigned portfolio of donors, prospective donors, sponsors, and prospective sponsors. Assist the President and CEO and fundraising team with all actions in their donor portfolio.

    • Help create board portfolios with assigned donors and sponsors, then track and manage actions needed from each board member and appropriate volunteers in their personal management of their portfolios—Supply them with all needed materials and instructions to be effective

    • Conduct face-to-face and/or phone and online communication with such donors and sponsors on a regular basis

    • Write and share correspondence to donors as needed between interactions with the team. Prepare personal proposals for specific asks to individual donors

    • Help develop and assess policies and procedures that are essential for a comprehensive donor relations program.

  • Tracking, Reporting, and Database Management

    • Manage the completion and filing of donor contact reports (using the organization’s CRM/Salesforce). Use reports to inform strategies and priorities, integrating insights and tasks.

    • Help maintain the donor database and all records via, including occasional gift entries and record updates and cleaning.

    • Track and manage all actions assigned to the full team

  • Gift Acknowledgement

    • Assist the President and CEO and fundraising team in preparing and sending personal gift and pledge acknowledgements

    • Assist the President and CEO and fundraising team in other creative ways to thank and involve donors

    • Assist the President and CEO in ensuring the sponsorship benefits and grant acknowledgements are delivered and communiated appropriately

  • Relationship with SDS Families and Related Constituents

    • Assist the president and CEO and staff/volunteers with peer-to-peer fundraising platforms (e.g.GiveLively)  and initiatives, and provide families with practical and creative ways for them to utilize such platforms with their personal networks.  

    • Liaise with other stakeholders, such as extended family members and friends/colleagues of family members etc. to inspire new and creative ways for them to direct funds toward SDS Alliance.

    • Coordinate communications and strategies with the Patient and Stakeholder engagment team

  • Communications

    • Assist President and CEO, board members, staff, and volunteers, in preparing newsletters and annual impact reports, and help develop other content for stakeholders/constituents

    • Contribute content to the website and social media sites to keep them fresh with inspiring and relevant content and news

    • Help the President and CEO and fundraising team create and write blog posts with research updates and other inspiring content for key constituents

  • Assistance with Meetings & Events

    • Assist to prepare for meetings for various stakeholders, in particular, the community and donor base

    • Initiate ideas for donor events and help manage such events with core board members and the CEO and President

    • Assist with appropriate and agreed upon donor and sponsor acknowledgements

  • Participation in Meetings

    • Participate in weekly (and other meetings as needed) with the CEO and development team (online). Interact regularly online and otherwise with the President and CEO

  • Ongoing Education

    • Attend Chan Zuckerberg Initiative (CZI) seminars and other learning sessions as assigned by the CEO; seek additional learning and networking opportunities

    • Learn and stay informed about the disease state, research priorities, and clinical guidelines and current challenges

  • Recruit, train, and manage volunteers

  • Provide staffing to the SDS Alliance Fundraising Committee (if/when available) to accomplish committee objectives

Terms of Contracting or Employment

This is a part-time contract position with an initial 16-24 hours per week as needed, with an hourly rate of $30-$40/hour. Hours may increase as the organization’s need change and as the candidate’s availability allows. This position may start out as a contractor for specific projects but may transition to part-time or full-time employment over time, as the organization’s needs and capacity evolve, and as negotiated between the candidate and the organization.

The hours needed may vary based on project and organization needs. The President and CEO will determine the hours and compensation according to the organization's policies, and commensurate with the candidate's experience, skill, and time commitment. The position does not include a benefits package at this time.

About the SDS Alliance

The SDS Alliance is a US-based 501(c)(3) nonprofit organization serving the global SDS community and is dedicated to building a world where SDS is curable - through driving research and engaging in advocacy and education.

The SDS Alliance brings together patient families, researchers, clinicians, regulators, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder, driving the development of therapies and cures. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

The organization is rapidly growing from a startup into a more mature, professional organization, supported by the Rare As Once Grant from the Chen Zuckerberg Initiative. The work environment is professional, passionate, flexible, dynamic, and fully remote. Staff, contractors, and volunteers are expected to adjust to the organization's changing needs. The team is passionate about the mission, focused, and efficient, always keeping the community’s best interest at heart, and celebrating milestones achieved together.

How to Apply

Send a cover letter and CV/resume to

Add “Job Application” in the subject line.

Jacquelyn Kaufmann Poarch
Chair of the Adult SDS Patient Council - SDS Alliance

Jacquelyn Poarch is an adult with SDS, who was diagnosed by Dr Harry Schwachman in 1976. She has been active in patient advocacy for over 25 years.


Ms Poarch is a multi-subject certified teacher, who concentrates on science education, primarily secondary and tertiary school Biology, and Anatomy and Physiology, and Medical Terminology. She has had an eclectic career path, including as an opera singer in Europe, flying airplanes, and working in commercial aviation, as a social worker for the US Navy, and for the last 25 years, as a teacher.  During the Balkan War, she formed a 501c3, and went to Bosnia, and removed 98 teens, placed them with American families, and in high  schools so they could survive, and be educated. Ms Poarch has attended, and holds degrees and licenses from such diverse institutions as Universität Mozarteum, Salzburg, Austria, Manhattan School of Music (US), Columbia University (US), Stony Brook University (US), and Cambridge University (UK).


She is a licensed phlebotomist, and a HIPAA educator, and speaks twelve languages. She is the mother of a daughter with an unrelated rare disease.

In her role at the SDS Alliance, she manages the Adult SDS Patient Council, and finds, engages, and supports adult patients worldwide. We invite all adult SDS patients to participate and join the Adult SDS Patient Council.

Lisa Superina
Family and Community Engagement Ambassador - SDS Alliance

Lisa lives on Long Island, New York, with her husband and four daughters. Her two youngest daughters, Nora and Kayla, were genetically diagnosed with SDS after an extensive diagnosis journey - read their story, here. Lisa is a Special Education Teacher at Half Hollow Hills High School West in Dix Hills, New York. She has certifications from Birth-12th grade in Special Education, General Education, and English Language Arts and has a master's degree in Literacy. 


Lisa is passionate about helping the SDS community by supporting research and helping families advocate for their children. She jumped into action on the very same day her first child was diagnosed, raising funding, researching resources, and connecting with SDS families everywhere, and has not stopped ever since. Her drive and creativity have inspired countless other families to engage and she is an unstoppable positive driving force toward therapies and cures for people with SDS everywhere. 

In her role at the SDS Alliance, she helps find and support new SDS families, identify and offer new resources for families, and develop family educational materials and events.

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