Careers

Reports to:               Chief Financial Officer
Direct Reports:       Database Coordinator

*Applications without a cover letter will not be considered*

Position Description:

The Technology & Operations Manager will lead the strategic planning, implementation, and management of all technology initiatives at HDSA. This role is crucial for modernizing our technological infrastructure, enhancing operational efficiency, and supporting the organization’s mission. The ideal candidate will be a hands-on leader who can manage a variety of systems, from hardware and software to key technology platforms, and translate technological goals into tangible operational improvements.

Key Responsibilities

Technology Strategy & Management

• Develop and execute a comprehensive technology strategy that aligns with HDSA’s long-term goals.
• Oversee the entire technology lifecycle, including research, acquisition, implementation, and maintenance of all hardware, software, and IT systems.
• Manage technology platforms, ensuring they are optimized for performance, security, and scalability. This includes the CRM, financial software, and other key applications.
• Act as the primary point of contact for all technology-related issues, providing support and troubleshooting for staff.
• Manage the organization’s website platform, ensuring it is up-to-date, user- friendly, and effectively serves the needs of both the national office and local chapters.

Operational Process Improvement & Efficiency

• Identify opportunities to use technology to streamline operations and improve workflow efficiency across all departments and chapters.
• Lead projects focused on digital transformation, such as migrating to new platforms, automating manual processes, and integrating different software systems.
• Analyze and evaluate current operational processes from both a technology and human perspective. This includes identifying pain points, redundancies, and inefficiencies in existing workflows.
• Develop and implement policies and procedures to ensure data integrity and security, as well as regulatory compliance.
• Create and maintain a tech support system that is both responsive and proactive, training staff on new technologies as needed.

Project & Vendor Management

• Manage relationships with external technology vendors and consultants, negotiating contracts and ensuring service level agreements (SLAs) are met.
• Lead the vendor vetting and selection process for major projects, including website and CRM migration initiatives. This includes developing RFPs, evaluating proposals, and conducting due diligence on potential partners.
• Collaborate with department heads and chapter leadership to understand their technological needs and provide solutions that empower their work.
• Report on technology performance, project progress, and budget to the executive team.

Qualifications

• Bachelor’s degree in Computer Science, Information Technology, Business Administration, or a related field.
• Proven experience in a technology management or operations role, preferably within the non-profit sector.
• Experience working within chapter-based organizational structure is highly desired.
• Demonstrated experience in managing large-scale technology projects, such as website redesigns and CRM migrations.
• Strong understanding of IT infrastructure, including hardware, software, and networking.
• Experience with CRM systems, financial software, and data.
• Exceptional problem-solving skills and the ability to manage multiple projects simultaneously.
• Excellent communication and interpersonal skills, with a talent for translating complex technical concepts into clear, understandable terms for non-technical staff.
• A passion for the mission of HDSA and a commitment to using technology to make a

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 $80,000 – $95,000 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: Technology & Operations Manager.

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) Utah 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) Utah (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: $45 per hour

Hours offered are: ­­­­20 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 of 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 of 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) Western Pennsylvania 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 will run area support groups and serve as a liaison with the HDSA Center of Excellence in Pittsburgh. The social worker hired by the Huntington’s Disease Society of America (HDSA) Pennsylvania (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 required on-site support for in-person support groups, in-services, clinic work, 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 [this includes on-site attendance one day a month] 

• 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 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 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 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 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 insurance 

• Staying current on HD research and opportunities to participate 

• Understanding family dynamics that care is 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 attending the many sessions at Convention. 

Additional details are available upon request and questions are welcome. All interested candidates may send their resume materials to Jessica Marsolek, MSW, LICSW Associate Director, Community Services at: jmarsolek@hdsa.org 

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) Connecticut (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: $45 per hour 

Hours offered are: 6 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.