Careers

Technology & Operations Manager

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.

HDSA Nevada Social Worker

Remote within Nevada

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 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

HDSA Utah Social Worker

Remote within Utah.

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

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

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

HDSA Western Pennsylvania Social Worker

Remote within Pennsylvania

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

Regional Development Officer - Pacific/West Region

Remote in Pacific West Region

Position Description:

The Regional Development Officer (RDO) – Pacific/West Region is responsible for driving sustainable revenue growth, deepening community engagement, and strengthening volunteer leadership infrastructure to advance HDSA’s mission across the region.

This role leads a comprehensive regional fundraising and community development strategy focused on donor cultivation, corporate and foundation partnerships, peer-to-peer campaigns, and signature special events. The RDO also serves as a strategic partner to Chapters and Affiliates by developing stronger communities, to building strong volunteer leadership pipelines, ensuring board sustainability, and expanding mission engagement activities that support families impacted by Huntington’s disease.

This is a full-time, exempt, remote position that can be based in any of the key market areas within the Pacific/West Region. The RDO reports to the National Director of Field Operations and plays a critical role in ensuring HDSA’s financial strength and volunteer sustainability in the Pacific/West Region. By integrating fundraising excellence with community engagement and leadership development, this position directly advances HDSA’s ability to serve and support families affected by Huntington’s disease — particularly as demand for care, education, and advocacy continues to grow.

Key Responsibilities

Revenue Growth & Donor Strategy

Develop and execute a regional development plan to achieve and exceed annual revenue goals.
Lead planning, execution, and evaluation of signature fundraising events and peer-to-peer campaigns.
Cultivate, solicit, and steward individual donors, sponsors, corporate partners, and foundation funders.
Identify and grow mid-level and major donor prospects through strategic relationship management.
Expand sponsorship portfolios and grant opportunities aligned with regional priorities.
Ensure accurate tracking, reporting, and stewardship within HDSA’s donor database.

Community Engagement & Regional Expansion

Serve as HDSA’s primary ambassador in the Pacific/West Region, strengthening visibility and mission presence.
Build meaningful relationships with families, Centers of Excellence, healthcare partners, and community stakeholders.
Identify opportunities to expand HDSA programming, events, and outreach into emerging markets.
Support mission-related initiatives, including education days, awareness campaigns, and community gatherings.

Volunteer Leadership & Chapter Development

Partner with Chapter and Affiliate leaders to recruit, develop, and retain strong volunteer Boards and committees.
Provide strategic guidance on governance, succession planning, and leadership continuity.
Support volunteer engagement strategies that diversify fundraising, programming, and community outreach activities.
Strengthen alignment between local volunteer efforts and HDSA’s national strategic priorities.
Foster a culture of accountability, collaboration, and shared growth across the region.
Support and maintain a working knowledge of organizational mission initiatives, including advocacy, community services, and education, research and awareness activities.
Assist Chapters and Affiliates with the preparation of annual budgets and income projections to support mission activities in their communities and regularly review revenue and expenses, progress to goals, and the status of pledges and gifts.
Stay aware and informed of the status of the HD drug development pipeline, HDSA-funded research, and HDSA mission programs and services.
Maintain collaborative team relationships with peers and colleagues in order to effectively contribute to the society’s achievement of goals and help foster a positive work environment.
Consistently apply the society’s organizational values of HD Families First, Honesty & Integrity Always, Respect, and Collaboration in everything we do.
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:

The successful candidate will meet the following qualifications:

Bachelor’s degree required; advanced degree or CFRE preferred.
6-8+ years of progressive nonprofit development leadership experience with direct accountability for $750,000-$1.5M in annual revenue.
Demonstrated success leading multi-channel fundraising strategies, including major gifts, corporate partnerships, foundation grants, and large-scale peer-to-peer or signature events.
Proven ability to build and manage high-performing regional teams, including direct supervision of development staff and strategic partnership with volunteer Boards.
Ability to manage, direct and inspire colleagues, sponsors, and volunteers.
Strategic thinker with experience developing multi-year regional growth plans aligned with national organizational strategy.
Financial acumen including budgeting, revenue forecasting, and performance analysis.
Skilled communicator and external ambassador capable of representing the organization with volunteers, corporate executives, clinicians, and high-capacity donors.
Ability to travel regionally (25–30%) and operate effectively by working with a large, geographically diverse volunteer team.
Proficient knowledge of Microsoft Office Suite, Donor databases, and peer to peer event platforms a must.

Why Join Us?

Full Coverage Healthcare:

· 100% premiums covered for employees enrolled in our baseline medical, dental, and vision plans.

· 70% of premiums covered for enrolled dependents under the same plans.

Protection & Peace of Mind:

· We fully cover short-term and long-term disability insurance.

· 100% of the premium paid for life insurance for all employees.

Retirement Savings:

· 5% company contribution to your 403(b)-retirement plan- no match required, after just 1 year of employment.

Paid Time Off + Company-wide breaks:

· Generous PTO package.

· Enjoy one full week off in July and one full week off in December, in addition to standard PTO.

Job Type: Full-time

Pay: $85,000.00 – $95,000.00 per year

Benefits:

403(b)
403(b) matching
Dental insurance
Health insurance
Paid time off
Vision insurance

About HDSA

The Huntington’s Disease Society of America (HDSA) is the nation’s leading nonprofit
organization dedicated to improving the lives of individuals and families affected by
Huntington’s disease. Guided by a singular mission and a deep commitment to community,
HDSA delivers comprehensive support through education, advocacy, community services,
and research, providing help for today and hope for tomorrow. As the field stands on the
threshold of potential disease-modifying therapies, HDSA is advancing a bold, forward
looking strategic plan to expand access, strengthen care infrastructure, and prepare the
community for this transformative era. With an annual operating budget of approximately
$13 million, a diversified revenue portfolio that includes philanthropy, grants, corporate
partnerships, and signature events, and stewardship of a $10 million investment and
banking portfolio to ensure long-term sustainability, HDSA is poised for growth. We seek
mission-driven professionals who value integrity, collaboration, and meaningful impact, and
who are inspired to help shape the organization’s financial strength and future during this
pivotal time.

To apply, click: here

Special Events Assistant

Remote

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:

Event & Database Administration
• Ensure all event, donor, and volunteer contact information is accurately entered
and maintained in the HDSA donor database, and that event lists are updated in
a timely manner
• Generate event and volunteer management reports
• Track event submissions and maintain the Master Event Calendar
• Verify accuracy of event web pages, including project codes and banners
• Pull year-end reports, including attendance, team captain data, and incentive lists
• Email weekly revenue reports to Regional Development Directors, as directed
Financial & Reporting Support
• Submit invoices through Microix
• Assist with Square reports, credit card processing, and invoicing
• Support year-end and special financial reporting needs
Marketing, Communications & Collateral
• Draft and schedule approved e-blasts and create/manage e-blast timelines
• Create, distribute, and update regional and chapter event collateral
• Order pre-event materials, including event kits and T-shirts
• Create annual Team Hope Walk collateral templates in collaboration with
Marketing & Communications
• Post approved social media updates on Chapter Facebook pages
• Maintain DonorView/Mailchimp email lists annually
• Assist volunteers with troubleshooting registration issues on GoFundMePro
(GFMP)
Sponsor & Chapter Support
• Provide administrative support for sponsor management, including:
o Maintaining sponsor records
o Tracking contracts and payments and creating invoices
o Collecting sponsor assets
o Supporting fulfillment of sponsor benefits and recognition
• Compile lists of prospective sponsors and in-kind donors
• Manage Chapter and Affiliate board rosters and meeting minutes
• Oversee Chapter and Affiliate P.O. Box renewals, purchases, and closures
Special Projects (As Needed)
• Prepare mail and email lists and mail merges
• Assist with creative materials such as impact reports
• Support additional regional, chapter, or event-related projects as directed by the
RDO

Qualifications:

The successful candidate will meet the following 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.

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:

Full Coverage Healthcare:

• 100% premiums covered for employees enrolled in our baseline medical, dental,
and vision plans.
• 70% of premiums covered for enrolled dependents under the same plans.

Protection & Peace of Mind:

• We fully cover short-term and long-term disability insurance.
• 100% of the premium paid for life insurance for all employees.

Retirement Savings:

• 5% company contribution to your 403(b)-retirement plan- no match required, after
just 1 year of employment.

Paid Time Off + Company-wide breaks:

• Generous PTO package.
• Enjoy one full week off in July and one full week off in December, in addition to
standard PTO.

Job Type: Full-time

Pay: $42,000- $46,000 Per Year

About HDSA:

The Huntington’s Disease Society of America (HDSA) is the nation’s leading
nonprofit organization dedicated to improving the lives of individuals and families
affected by Huntington’s disease. Guided by a singular mission and a deep commitment
to community, HDSA delivers comprehensive support through education, advocacy,
community services, and research, providing help for today and hope for tomorrow. As
the field stands on the threshold of potential disease-modifying therapies, HDSA is
advancing a bold, forward-looking strategic plan to expand access, strengthen care
infrastructure, and prepare the community for this transformative era. With an annual
operating budget of approximately $13 million, a diversified revenue portfolio that
includes philanthropy, grants, corporate partnerships, and signature events, and
stewardship of a $10 million investment and banking portfolio to ensure long-term
sustainability, HDSA is poised for growth. We seek mission-driven professionals who
value integrity, collaboration, and meaningful impact, and who are inspired to help
shape the organization’s financial strength and future during this pivotal time.

To apply, click here

HDSA Connecticut Social Worker

Remote within Connecticut

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 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:

Reporting and technology information:

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)