Careers

Reports to:               President & Chief Executive Officer
Direct Reports:       Finance & Operations Team (Director of Finance, Finance Associate, additional 2 staff)

Position Description:
The Chief Financial Officer (CFO) will provide financial leadership and oversight for the HDSA.
The CFO is a key member of the senior leadership team and is responsible for all financial aspects of the organization, including strategic financial planning, accounting, budgeting, forecasting, treasury operations, and risk management. This role requires a professional who can manage and improve financial systems while upholding the highest standards of integrity and transparency.

As we prepare for potential disease-modifying therapies, the CFO will be instrumental in building the financial and operational infrastructure to support significant growth in research funding, patient services, and advocacy efforts and to ensure the appropriate deployment of the organization’s resources.

The new CFO will have the opportunity to lead the development of a long-term investment strategy in collaboration with the Investment Committee with an eye toward sustainable growth for the organization and its assets.

The CFO will also be in charge of helping to modernize the organizational infrastructure, alongside the Director of Operations, to optimize processes and create internal efficiencies.

Key Responsibilities:
Financial Strategy & Leadership:
• Strategic Planning: Collaborate with the CEO and senior leadership team to develop, evaluate and monitor key strategic plan metrics and financial KPIs.
• Analyze ROI on expenses and fundraising initiatives to guide resource allocation and organizational impact.
• Budget Management: Oversee the annual budgeting process, ensuring resources are allocated effectively towards the goal of maintaining a balanced budget, and prepare periodic (e.g., quarterly) forecasts to manage progress towards that goal throughout the year to inform strategic and operational decision-making.
• Financial Reporting: Prepare and present accurate, timely financial reports to the CEO, Audit, Finance and Investment Committee, Board of Trustees, and other stakeholders.
• Serve as a staff lead for the Audit, Finance and Investment Committee.
• Fundraising Support: Collaborate with the development team to provide financial analysis and data for grant applications and fundraising initiatives.
• Evaluate departmental structure and resource needs to ensure the finance, operations and administration functions are positioned for current and future organization needs.
• Oversee financial stewardship of restricted funds and ensure accurate grant reporting to funders and donors.
• Model long-term sustainability scenarios in anticipation of changes in research funding and patient care needs.

Accounting & Operations:
• Accounting Oversight: Manage all accounting operations, including accounts payable, accounts receivable, and payroll.
• Treasury Management: Monitor and manage cash flows to ensure liquidity and operational efficiency and establish policies or operating (working) capital needs and long-term investment strategy,
• Internal Controls: Maintain and enforce a robust system of internal controls to protect the organization’s assets and ensure data integrity.
• Manage and ensure timely and accurate financial reporting, including internal reports and external filings (IRS Form 990)
• Audits: Serve as the primary point of contact for external auditors, ensuring a smooth and successful annual audit.
• Compliance: Ensure the organization complies with all relevant federal, state, and local financial regulations and reporting requirements.
• Ensure integration of finance and development systems for streamlined donor and grant tracking.

Risk Management:
• Risk Assessment: Identify potential financial risks and develop strategies to mitigate them.
• Investment Management: Oversee the management of the organization’s investment portfolio in collaboration with the Investment Committee.

Qualifications:
Required:
• Education: A bachelor’s degree in finance, Accounting, Business Administration, or a related field. A master’s degree or CPA certification is highly preferred.
• Experience: At least 10 years of progressive experience in financial management, with a minimum of 5 years in a senior leadership role.
• Non-Profit Experience: Proven experience working in the non-profit sector, including knowledge of non-profit accounting principles (FASB ASC 958) and regulations.
• Technical Skills: Proficiency with financial management software and advanced Excel skills. Experience with a variety of accounting systems, experience with MIP is a plus.
• Communication: Excellent written and verbal communication skills, with the ability to present complex financial information clearly and concisely to diverse audiences.
• Experience with nonprofit fundraising and donor reporting. Experience working with CRM/donor databases (e.g., Salesforce, Raiser’s Edge).
• Experience leading systems modernization projects, including ERP or accounting systems transitions.

Preferred:
• Experience working within a national chapter-based organization, preferably in the national voluntary health agency sector.
• Experience presenting to and working with boards and governance committees.
• Knowledge of grant management and reporting

Personal Attributes:
• Integrity: A high degree of honesty and ethical conduct.
• Leadership: Strong leadership skills with the ability to mentor and manage a team.
• Mission-Driven: A genuine passion for HDSA’s mission and a commitment to serving the Huntington’s disease community.

Why Join Us?
We offer a mission-driven culture and highly supportive work environment. HDSA is an equal opportunity employer and committed to diversity. We’re proud to support our team with a comprehensive and generous benefits package that prioritizes well-being, security, and time to recharge.

Exempt, full-time. Salary range $175,000 – $200,000 per year. Commensurate with experience. 

For additional information, please CLICK HERE.

To apply, please submit your resume and cover letter in PDF format to careers@hdsa.org with the subject line: Application – Chief Financial Officer.

Reports to:              Chief Mission Officer

Position Description:
The Senior Manager, Educational Programs is a mission-driven leader playing a key role in developing and delivering educational content that supports HDSA’s mission and strategic goals. This position is responsible for designing, implementing and evaluating a wide range of high-impact educational offerings, including national and regional events, digital resources, and publications for the Huntington’s disease community. This is a collaborative, hands-on role ideal for someone who is both a strategic thinker and strong project manager that enjoys working with both internal and external teams (volunteers and professional partners) and has a passion for creating accessible, effective educational experiences for people living with HD and their families.

Key Responsibilities:

• Collaborate with the Chief Mission Officer to establish HDSA’s educational priorities.

• Oversee HDSA Education Day Program
Develop dynamic and compelling content for events.
Coordinate annual schedule of events.
Support volunteer event planners.

• Lead Convention Program Development
Develop Annual Convention program/curriculum and coordinate speakers in partnership with staff and volunteer committees.
Oversee event planning team and consultants managing Convention logistics.
Evaluate annual content and support content distribution.

• Develop and Manage Educational Resources
Maintain HDSA’s resource library through regular review, content updates, and new resource development.
Manage website-based educational materials; ensuring content is accurate, engaging, and aligned with the community’s needs.

• Build Strategic Partnerships
Identify collaboration opportunities with other HD or rare disease organizations to expand the reach and impact of educational initiatives.

• Measure Program Effectiveness
Define and track metrics to evaluate program success and inform continuous improvement.

• Support Grant Development
Partner with Corporate Development staff to provide content and strategic input to support educational grant proposals and reporting efforts.

• Contribute to Team Success
Participate in cross-functional initiatives and take on additional responsibilities as needed.

Qualifications:
• Bachelor’s degree in education, public health, nonprofit management, communications or related field.
• Minimum of three (3) years of experience developing and managing educational programs, preferably in a nonprofit and/or rare disease organization.
• Strong communication and marketing experience.
• Ability to collaborate efficiently with internal staff, volunteers, and other external stakeholders.
• Excellent written and verbal communication and interpersonal skills.
• Proven experience in program planning, curriculum design, and content development.
• A strong desire to continually improve and undertake new challenges, with a commitment to excellence and attention to detail.
• Collaborative team player who pitches in to do what needs to be done – is a problem solver.
• Ability to work independently with hybrid in-person/remote team.
• High integrity: ability to operate with discretion.
• Flexible in the face of changing priorities.
• Ability to work occasional weekends and evenings.
• Some travel approximately 25% of the time.
• Proficiency with Microsoft Office Suite (Word, PowerPoint, Excel, Outlook.)

Why Join Us?
We offer a mission-driven culture and highly supportive work environment. HDSA is an equal opportunity employer and committed to diversity. We’re proud to support our team with a comprehensive and generous benefits package that prioritizes well-being, security, and time to recharge.

Exempt, full-time. Salary range $78,000 – $85,000 per year. Commensurate with experience. 

CLICK HERE to apply.

Reports to:            Associate Director, Regional Development

*Applications without a cover letter will not be considered*

Position Description:
We are seeking a detail-oriented and dynamic Special Events Assistant to support our Regional Development Officers and volunteers in planning and executing events. This role is primarily administrative and logistical, providing essential behind-the-scenes support to ensure the success of fundraising events, donor engagements and other key initiatives.

The ideal candidate will have experience producing high-quality event collateral (emails, signage, programs) preparing donor and sponsor reports and managing event logistics from pre-event planning to post event wrap up. Strong organizational skills, excellent communication and the ability to manage multiple deadlines are essential.

Key Responsibilities:
• Ensure that all event, donor, and volunteer information is captured in the HDSA donor database.
• Generate event reports to support volunteer event management.
• Ensure post-event financial reports and donated goods & services reports are submitted in a timely manner.
• Draft and distribute approved e-blasts to promote Regional/Chapter/Affiliate events and activities.
• Manage the collection of Chapter/Affiliate board rosters and board meeting minutes.
• Order pre-event collateral, including event kits and t-shirts.
• Develop a personal commitment and understanding of Huntington’s disease and those who have it and be able to articulate the programs of HDSA that need support.

Qualifications:
• Associate’s degree required; Bachelor’s degree from an accredited four-year college or university preferred.
• Minimum of two years providing administrative support to a multi-member remote team. Experience in a fundraising or sales environment a plus.
• Demonstrated ability to multi-task effectively with exceptional organizational and communication skills. Understanding of volunteer-led organizations.
• Must be a self-starter with the right levels of flexibility and awareness, in accomplishing the responsibilities of the position and meet deadlines, attention to detail, and good humor.
• Mastery of Microsoft Office suite and a strong understanding of database functionality, such as fundraising/CRM software.
• Consistently apply the society’s organizational values of HD Families First, Honesty & Integrity Always, Respect, and Collaboration in everything we do.

Why Join Us?
We offer a mission-driven culture and highly supportive work environment. HDSA is an equal opportunity employer and committed to diversity. We’re proud to support our team with a comprehensive and generous benefits package that prioritizes well-being, security, and time to recharge.

Exempt, full-time. Salary range $42,000 – $46,000 per year. Commensurate with experience.

CLICK HERE to apply.

Huntington’s Disease Society of America (HDSA) Nevada Regional Social Worker
Job Description:
This part time social worker will assist local individuals with Huntington’s disease (HD), providing families and community professionals with information, resources and assistance. The social worker hired by the Huntington’s Disease Society of America (HDSA) Pacific West Region (Chapter/Region) works for HDSA, the national non-profit organization dedicated to improving the lives of those affected by HD. HDSA social workers offer support to people living with HD, provide referrals to local resources and services, help to raise community awareness about HD, promote advocacy and encourage research participation.
Rate offered is: $30 per hour
Hours offered are: 20 hours per month
Primary area of service: Nevada
Position is primarily remote (phone, virtual), but there will be opportunities for in-person support groups, in-services, and educational events. This will be determined in conversation with HDSA.

Position Description:

The position is to assist families and other professionals to find and provide appropriate referrals to services for people living with HD. Case management is not a primary function of the HSDA Chapter/Regional Social Worker, but may be necessary in some situations. The social worker should be familiar with crisis services available in the community for callers needing crisis mental health or medical services.
The HDSA Chapter/Regional Social Worker key responsibilities include: 

Position is primarily remote (phone, virtual), but there will be opportunities for in-person support groups, in-services, and educational events. This will be determined in conversation with HDSA.

The position is to assist families and other professionals to find and provide appropriate referrals to services for people living with HD. Case management is not a primary function of the HSDA Chapter/Regional Social Worker, but may be necessary in some situations. The social worker should be familiar with crisis services available in the community for callers needing crisis mental health or medical services.

The HDSA Chapter/Regional Social Worker key responsibilities include:

• Manage a part-time helpline (both phone and email) for residents of the HDSA
Chapter/Region catchment area impacted by HD
• Run a monthly support group for individuals in the Chapter/Region catchment area impacted by Huntington’s disease (additional details to be discussed with HDSA and HDSA Chapter/Region leadership)
• Monitor monthly peer led support groups and provide guidance to group leaders in the Chapter/Region catchment area, if applicable
• Partner with the teams at HD specific multidisciplinary care programs at the HDSA Center of Excellence in the Chapter/Region catchment area to assist in case coordination and care, if applicable
• Partner with HDSA Chapter/Region leadership to plan, execute and promote HDSA Community Education programming
• Create and maintain a resource guide to answer questions and provide referrals on relevant issues important to the community in the Chapter/Region catchment area
• Interact with local professionals (home health agencies, long-term care facilities, local MDs and clinics, law enforcement) in the Chapter/Region catchment area to educate and inform so that new avenues for services are made available to local families
• Interact with HDSA National Office staff, including the Chief Mission Officer, the Manager, Youth & Community Services and the HDSA Pacific West Regional Development Officers.

Qualifications:
An MSW from an accredited institution is required, along with valid social work licensure in in the Chapter/Region catchment area (LCSW preferred). Experience with neurologic disease, hospice and/or long-term care facilities is highly preferred. Ability to work independently and be a self-starter are key qualities to a successful candidate.

Reporting and technology information:
All HDSA Chapter/Regional Social Workers are required to utilize software (Apricot) made available by HDSA to track services provided, time spent and resources identified. The software is HIPAA compliant and identifying information about individuals and families served will not and cannot be reported by the national office. HDSA Chapter/Regional Social Workers will be issued a phone number with voicemail and texting capabilities through Zoom to act as their work phone. HDSA Chapter/Regional Social Workers are expected to utilize this service on their own devices through their mobile phone carrier provider.

Professional support and education:
HDSA Chapter/Regional Social Workers will work on the following core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & Community Services will provide support, education, and guidance to new social workers in this process.
HD core competencies include:
• Being able to discuss key aspects of the disease, “What is HD?”
• Explaining the importance of multidisciplinary evaluations and care when living with HD (including the role of professionals: neurologist, movement disorder neurologist, psychiatrist, psychologist, and ancillary services)
• Understanding and being conversant about medications for psychiatric and movement symptoms
• Discussing genetic testing for HD
• Discussing advanced medical directives
• Providing education on conservatorship/guardianship, power of attorney
• Understanding state, federal and private insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care unique to living with an inherited disease
• Discussing and providing guidance on long term care needs and placement resources

HDSA Chapter/Regional Social Workers are connected to a nationwide network of other HDSA Social Workers who work with people living with HD and who provide peer support and consults. HDSA Chapter/Regional Social Workers are required (and supported by HDSA Chapter/Region budgeted funds) to attend the annual Professional Training day held at the HDSA Annual Convention each June. This Professional Training day offers continuing education units and the opportunity to network with other HDSA Social Workers, as well as attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org

Huntington’s Disease Society of America (HDSA) Massachusetts’s/Rhode Island Social Worker

Job Description:

This part time social worker will assist local individuals with Huntington’s disease (HD), providing families and community professionals with information, resources and assistance. The social worker hired by the Huntington’s Disease Society of America (HDSA) Ohio Valley (Chapter/Region) works for HDSA, the national non-profit organization dedicated to improving the lives of those affected by HD. HDSA social workers offer support to people living with HD, provide referrals to local resources and services, help to raise community awareness about HD, promote advocacy and encourage research participation.

Rate offered is: $ 50 per hour

Hours offered are: 15 hours per month

Position is primarily remote (phone, virtual), but there will be opportunities for in-person support groups, in-services, and educational events. This will be determined in conversation with HDSA.

The position is to assist families and other professionals to find and provide appropriate referrals to services for people living with HD. Case management is not a primary function of the HSDA Chapter/Regional Social Worker, but may be necessary in some situations. The social worker should be familiar with crisis services available in the community for callers needing crisis mental health or medical services.

The HDSA Chapter/Regional Social Worker key responsibilities include:

• Manage a part-time helpline (both phone and email) for residents of the HDSA Chapter/Region catchment area impacted by HD
• Run a monthly support group for individuals in the Chapter/Region catchment area impacted by Huntington’s disease (additional details to be discussed with HDSA and HDSA Chapter/Region leadership)
• Monitor monthly peer led support groups and provide guidance to group leaders in the Chapter/Region catchment area, if applicable
• Partner with the teams at HD specific multidisciplinary care programs at the HDSA Center of Excellence in the Chapter/Region catchment area to assist in case coordination and care, if applicable
• Partner with HDSA Chapter/Region leadership to plan, execute and promote HDSA Community Education programming
• Create and maintain a resource guide to answer questions and provide referrals on relevant issues important to the community in the Chapter/Region catchment area
• Interact with local professionals (home health agencies, long-term care facilities, local MDs and clinics, law enforcement) in the Chapter/Region catchment area to educate and inform so that new avenues for services are made available to local families
• Interact with HDSA National Office staff, including the Associate Director, Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in in the Chapter/Region catchment area (LCSW preferred). Experience with neurologic disease, hospice and/or long-term care facilities is highly preferred. Ability to work independently and be a self-starter are key qualities to a successful candidate.

Reporting and technology information:

All HDSA Chapter/Regional Social Workers are required to utilize software (Apricot) made available by HDSA to track services provided, time spent and resources identified. The software is HIPAA compliant and identifying information about individuals and families served will not and cannot be reported by the national office. HDSA Chapter/Regional Social Workers will be issued a phone number with voicemail and texting capabilities through Zoom to act as their work phone. HDSA Chapter/Regional Social Workers are expected to utilize this service on their own devices through their mobile phone carrier provider.

Professional support and education:

HDSA Chapter/Regional Social Workers will work on the following core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Associate Director, Community Services will provide support, education, and guidance to new social workers in this process.

HD core competencies include:

• Being able to discuss key aspects of the disease, “What is HD?”

• Explaining the importance of multidisciplinary evaluations and care when living with HD (including the role of professionals: neurologist, movement disorder neurologist, psychiatrist, psychologist, and ancillary services)
• Understanding and being conversant about medications for psychiatric and movement symptoms

• Discussing genetic testing for HD
• Discussing advanced medical directives
• Providing education on conservatorship/guardianship, power of attorney

• Understanding state, federal and private insurances

• Staying current on HD research and opportunities to participate

• Understanding family dynamics that care unique to living with an inherited disease

• Discussing and providing guidance on long term care needs and placement resources

HDSA Chapter/Regional Social Workers are connected to a nationwide network of other HDSA Social Workers who work with people living with HD and who provide peer support and consults. HDSA Chapter/Regional Social Workers are required (and supported by HDSA Chapter/Region budgeted funds) to attend the annual Professional Training day held at the HDSA Annual Convention each June. This Professional Training day offers continuing education units and the opportunity to network with other HDSA Social Workers, as well as attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

All interested candidates, please send application materials to:

Jessica Marsolek, MSW, LICSW, Associate Director, Community Services, HDSA, jmarsolek@hdsa.org

Huntington’s Disease Society of America (HDSA) Iowa Chapter Social Worker

Job Description:

This part time social worker will assist local individuals with Huntington’s disease (HD), providing families and community professionals with information, resources and assistance. The social worker hired by the Huntington’s Disease Society of America (HDSA) Ohio Valley (Chapter/Region) works for HDSA, the national non-profit organization dedicated to improving the lives of those affected by HD. HDSA social workers offer support to people living with HD, provide referrals to local resources and services, help to raise community awareness about HD, promote advocacy and encourage research participation.

Rate offered is: $ 40 per hour

Hours offered are: 30 hours per month

Position is primarily remote (phone, virtual), but there will be opportunities for in-person support groups, in-services, and educational events. This will be determined in conversation with HDSA.

The position is to assist families and other professionals to find and provide appropriate referrals to services for people living with HD. Case management is not a primary function of the HSDA Chapter/Regional Social Worker, but may be necessary in some situations. The social worker should be familiar with crisis services available in the community for callers needing crisis mental health or medical services.

The HDSA Chapter/Regional Social Worker key responsibilities include:

• Manage a part-time helpline (both phone and email) for residents of the HDSA Chapter/Region catchment area impacted by HD
• Run a monthly support group for individuals in the Chapter/Region catchment area impacted by Huntington’s disease (additional details to be discussed with HDSA and HDSA Chapter/Region leadership)
• Monitor monthly peer led support groups and provide guidance to group leaders in the Chapter/Region catchment area, if applicable
• Partner with the teams at HD specific multidisciplinary care programs at the HDSA Center of Excellence in the Chapter/Region catchment area to assist in case coordination and care, if applicable
• Partner with HDSA Chapter/Region leadership to plan, execute and promote HDSA Community Education programming
• Create and maintain a resource guide to answer questions and provide referrals on relevant issues important to the community in the Chapter/Region catchment area
• Interact with local professionals (home health agencies, long-term care facilities, local MDs and clinics, law enforcement) in the Chapter/Region catchment area to educate and inform so that new avenues for services are made available to local families
• Interact with HDSA National Office staff, including the Associate Director, Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in in the Chapter/Region catchment area (LCSW preferred). Experience with neurologic disease, hospice and/or long-term care facilities is highly preferred. Ability to work independently and be a self-starter are key qualities to a successful candidate.

Reporting and technology information:

All HDSA Chapter/Regional Social Workers are required to utilize software (Apricot) made available by HDSA to track services provided, time spent and resources identified. The software is HIPAA compliant and identifying information about individuals and families served will not and cannot be reported by the national office. HDSA Chapter/Regional Social Workers will be issued a phone number with voicemail and texting capabilities through Zoom to act as their work phone. HDSA Chapter/Regional Social Workers are expected to utilize this service on their own devices through their mobile phone carrier provider.

Professional support and education:

HDSA Chapter/Regional Social Workers will work on the following core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Associate Director, Community Services will provide support, education, and guidance to new social workers in this process.

HD core competencies include:

• Being able to discuss key aspects of the disease, “What is HD?”

• Explaining the importance of multidisciplinary evaluations and care when living with HD (including the role of professionals: neurologist, movement disorder neurologist, psychiatrist, psychologist, and ancillary services)
• Understanding and being conversant about medications for psychiatric and movement symptoms

• Discussing genetic testing for HD
• Discussing advanced medical directives
• Providing education on conservatorship/guardianship, power of attorney

• Understanding state, federal and private insurances

• Staying current on HD research and opportunities to participate

• Understanding family dynamics that care unique to living with an inherited disease

• Discussing and providing guidance on long term care needs and placement resources

HDSA Chapter/Regional Social Workers are connected to a nationwide network of other HDSA Social Workers who work with people living with HD and who provide peer support and consults. HDSA Chapter/Regional Social Workers are required (and supported by HDSA Chapter/Region budgeted funds) to attend the annual Professional Training day held at the HDSA Annual Convention each June. This Professional Training day offers continuing education units and the opportunity to network with other HDSA Social Workers, as well as attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

All interested candidates, please send application materials to:

Jessica Marsolek, MSW, LICSW, Associate Director, Community Services, HDSA, jmarsolek@hdsa.org