Careers

Title:                       Community Development Project Manager          

Reports to:           Regional Development Officer (RDO)

Location:               Remote / Hybrid (Northeast Region: Greater New York Area, New Jersey, Boston)

Status:                    Independent Contractor

Duration:               Project launch date to start as soon as April 1,2026 and runs through December 31, 2026.

Compensation:    Monthly Retainer $4,500-$5,000 monthly with average weekly hours 35-40 hours

Applications without a cover letter will not be considered

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.

Project Overview:

HDSA is seeking a dynamic, relationship-driven Community Development Project Manager to lead the execution of fundraising and community engagement initiatives across assigned markets. This role oversees national signature events — including Team Hope Walks, Run/Ride events, Community Dinners, and Gala Fundraisers — with full accountability for revenue performance, volunteer leadership development, and participant experience. The Manager will build and strengthen peer-to-peer fundraising programs, recruit and mentor volunteer leaders, and develop sustainable event committees that drive both financial growth and community engagement year over year. In addition to event leadership, the Community Development Project Manager plays a critical role in strengthening and expanding HDSA’s local presence. This includes supporting chapters and affiliate volunteers through onboarding, training, governance alignment, and leadership development; cultivating new markets and partnerships; and serving as a connector between fundraising and mission programming The contract position requires a strategic thinker who can balance revenue generation with community support, ensuring that every initiative advances HDSA’s mission, volunteer infrastructure, and long-term organizational growth.

Scope of Services

Event Planning & Execution

• Serve as the primary point of contact for regional volunteer leaders and
  committees hosting HDSA fundraising events.
  • Manage logistics and planning for Team Hope Walks, Runs/Rides,
  Galas, and Dinners, ensuring events meet fundraising and attendance
  goals.
  • Coordinate with vendors, venues, sponsors, and volunteers to ensure
  successful event execution.
  • Oversee event registration platforms, donor tracking, budgeting, and
  reconciliation.
  • Maintain consistent branding and mission alignment across all event
  communications and materials.

Fundraising & Sponsorships

• Support volunteer leaders in identifying and securing local sponsors and
donors.
• Develop strategies to increase individual and team fundraising participation.
• Assist in the promotion of events through community outreach, local media
engagement, and collaboration with the national marketing team.

Volunteer & Chapter Support

• Serve as a resource to existing HDSA chapters and affiliates, offering
guidance and capacity- building support for their events and outreach
initiatives.
• Facilitate training and engagement for new and current volunteers
involved in events or chapter development.
• Collaborate with the National Team to promote and share best practices
across market areas and regions.

New Market Expansion

• Identify and cultivate relationships in untapped or underserved geographic
regions with the potential for event growth or new volunteer chapters.
• Develop and nurture partnerships with community stakeholders, healthcare
providers, and local businesses.

Support additional regional, chapter, or event-related projects as directed by the RDO

Qualifications:

The successful candidate will meet the following qualifications:

• Bachelor’s degree from an accredited four-year college or university required.
• 3-5 years experience in event management, nonprofit fundraising, or
volunteer development.
• Proven ability to work independently while managing multiple priorities and
deadlines.
• Strong communication, organizational, and interpersonal skills.
• Experience working with CRM and event registration platforms (e.g., Classy,
Blackbaud, or similar) and peer-to-peer fundraising.
• Willingness to travel occasionally for onsite event support, trainings and
HDSA Education Days.
• Strong experience in peer-to-peer fundraising and special event management
• Proven success in volunteer development and community organizing
• Ability to build sustainable volunteer committees and leadership pipelines
• A passion for HDSA’s mission by expanding access to support, education, and
resources for families impacted by Huntington’s disease
• Contractor to have necessary Equipment (Laptop/Cellphone/Wi-Fi – and Home
Office)

Apply here: https://www.indeed.com/job/community-development-project-manager-70f5913874ca331d

Title: Community Development Project Manager

Reports to: Regional Development Officer (RDO)

Location: Remote / Hybrid (Midwest Region: Illinois,

Michigan, Wisconsin, Missouri, Ohio)

Status: Independent Contractor

Duration: Project launch date to start as soon as June 1,2026 and runs through December 31, 2026.

Compensation: Monthly Payment $4,500-$5,000 monthly with average weekly hours 35-40 hours

Applications without a cover letter will not be considered

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.

Project Overview:

HDSA is seeking a dynamic, relationship-driven Community Development Project Manager to lead the execution of fundraising and community engagement initiatives across assigned markets. This role oversees national signature events — including Team Hope Walks, Run/Ride events, Community Dinners, and Gala Fundraisers — with full accountability for revenue performance, volunteer leadership development, and participant experience. The Manager will build and strengthen peer-to-peer fundraising

programs, recruit and mentor volunteer leaders, and develop sustainable event committees that drive both financial growth and community engagement year over year.

In addition to event leadership, the Community Development Project Manager plays a critical role in strengthening and expanding HDSA’s local presence. This includes supporting chapters and affiliate volunteers through onboarding, training, governance alignment, and leadership development; cultivating new markets and partnerships; and serving as a connector between fundraising and mission programming The contract position requires a strategic thinker who can balance revenue generation with community support, ensuring that every initiative advances HDSA’s mission, volunteer infrastructure, and long-term organizational growth.

Scope of Services

Event Planning & Execution

· Serve as the primary point of contact for regional volunteer leaders and committees hosting HDSA fundraising events.

· Manage logistics and planning for Team Hope Walks, Runs/Rides, Galas, and Dinners, ensuring events meet fundraising and attendance goals.

· Coordinate with vendors, venues, sponsors, and volunteers to ensure successful event execution.

· Oversee event registration platforms, donor tracking, budgeting, and reconciliation.

· Maintain consistent branding and mission alignment across all event communications and materials.

Fundraising & Sponsorships

· Support volunteer leaders in identifying and securing local sponsors and donors.

· Develop strategies to increase individual and team fundraising participation.

· Assist in the promotion of events through community outreach, local media engagement, and collaboration with the national marketing team.

Volunteer & Chapter Support

· Serve as a resource to existing HDSA chapters and affiliates, offering guidance and capacity- building support for their events and outreach initiatives.

· Facilitate training and engagement for new and current volunteers involved in events or chapter development.

· Collaborate with the National Team to promote and share best practices across market areas and regions.

New Market Expansion

· Identify and cultivate relationships in untapped or underserved geographic regions with the potential for event growth or new volunteer chapters.

· Develop and nurture partnerships with community stakeholders, healthcare providers, and local businesses.

Support additional regional, chapter, or event-related projects as directed by the RDO

Qualifications:

The successful candidate will meet the following qualifications:

· Bachelor’s degree from an accredited four-year college or university required.

· 3-5 years experience in event management, nonprofit fundraising, or volunteer development.

· Proven ability to work independently while managing multiple priorities and deadlines.

· Strong communication, organizational, and interpersonal skills.

· Experience working with CRM and event registration platforms (e.g., Classy, Blackbaud, or similar) and peer-to-peer fundraising.

· Willingness to travel occasionally for onsite event support, trainings and HDSA Education Days.

· Strong experience in peer-to-peer fundraising and special event management

· Proven success in volunteer development and community organizing

· Ability to build sustainable volunteer committees and leadership pipelines

· A passion for HDSA’s mission by expanding access to support, education, and resources for families impacted by Huntington’s disease

· Contractor to have necessary Equipment (Laptop/Cellphone/Wi-Fi – and Home Office)

Apply here: https://www.indeed.com/job/community-development-project-manager-70f5913874ca331d

Title: Community Development Project Manager

Reports to: Regional Development Officer (RDO)

Location: Remote / Hybrid Pacific West Region: Seattle, Denver)

Status: Independent Contractor

Duration: Project launch date to start as soon as June 1,2026 and runs through December 31, 2026.

Compensation: Monthly Payment $4,500-$5,000 monthly with average weekly hours 35-40 hours

Applications without a cover letter will not be considered

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.

Project Overview:

HDSA is seeking a dynamic, relationship-driven Community Development Project Manager to lead the execution of fundraising and community engagement initiatives across assigned markets. This role oversees national signature events — including Team Hope Walks, Run/Ride events, Community Dinners, and Gala Fundraisers — with full accountability for revenue performance, volunteer leadership development, and participant experience. The Manager will build and strengthen peer-to-peer fundraising programs, recruit and mentor volunteer leaders, and develop sustainable event committees that drive both financial growth and community engagement year over year.

In addition to event leadership, the Community Development Project Manager plays a critical role in strengthening and expanding HDSA’s local presence. This includes supporting chapters and affiliate volunteers through onboarding, training, governance alignment, and leadership development; cultivating new markets and partnerships; and serving as a connector between fundraising and mission programming The contract position requires a strategic thinker who can balance revenue generation with community support, ensuring that every initiative advances HDSA’s mission, volunteer infrastructure, and long-term organizational growth.

Scope of Services

Event Planning & Execution

· Serve as the primary point of contact for regional volunteer leaders and committees hosting HDSA fundraising events.

· Manage logistics and planning for Team Hope Walks, Runs/Rides, Galas, and Dinners, ensuring events meet fundraising and attendance goals.

· Coordinate with vendors, venues, sponsors, and volunteers to ensure successful event execution.

· Oversee event registration platforms, donor tracking, budgeting, and reconciliation.

· Maintain consistent branding and mission alignment across all event communications and materials.

Fundraising & Sponsorships

· Support volunteer leaders in identifying and securing local sponsors and donors.

· Develop strategies to increase individual and team fundraising participation.

· Assist in the promotion of events through community outreach, local media engagement, and collaboration with the national marketing team.

Volunteer & Chapter Support

· Serve as a resource to existing HDSA chapters and affiliates, offering guidance and capacity- building support for their events and outreach initiatives.

· Facilitate training and engagement for new and current volunteers involved in events or chapter development.

· Collaborate with the National Team to promote and share best practices across market areas and regions.

New Market Expansion

· Identify and cultivate relationships in untapped or underserved geographic regions with the potential for event growth or new volunteer chapters.

· Develop and nurture partnerships with community stakeholders, healthcare providers, and local businesses.

Support additional regional, chapter, or event-related projects as directed by the RDO

Qualifications:

The successful candidate will meet the following qualifications:

· Bachelor’s degree from an accredited four-year college or university required.

· 3-5 years experience in event management, nonprofit fundraising, or volunteer development.

· Proven ability to work independently while managing multiple priorities and deadlines.

· Strong communication, organizational, and interpersonal skills.

· Experience working with CRM and event registration platforms (e.g., Classy, Blackbaud, or similar) and peer-to-peer fundraising.

· Willingness to travel occasionally for onsite event support, trainings and HDSA Education Days.

· Strong experience in peer-to-peer fundraising and special event management

· Proven success in volunteer development and community organizing

· Ability to build sustainable volunteer committees and leadership pipelines

· A passion for HDSA’s mission by expanding access to support, education, and resources for families impacted by Huntington’s disease

· Contractor to have necessary Equipment (Laptop/Cellphone/Wi-Fi – and Home Office)

Apply here: https://www.indeed.com/job/community-development-project-manager-70f5913874ca331d

Title: Community Development Project Manager

Reports to: Regional Development Officer (RDO)

Location: Remote / Hybrid (Mid-Atlantic Region: Philadelphia, Pittsburgh,

D.C., Atlanta)

Status: Independent Contractor

Duration: Project launch date to start as soon as April 1,2026 and runs through December 31, 2026.

Compensation: Monthly Payment $4,500-$5,000 monthly with average weekly hours 35-40 hours

Applications without a cover letter will not be considered

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.

Project Overview:

HDSA is seeking a dynamic, relationship-driven Community Development Project Manager to lead the execution of fundraising and community engagement initiatives across assigned markets. This role oversees national signature events — including Team Hope Walks, Run/Ride events, Community Dinners, and Gala Fundraisers — with full accountability for revenue performance, volunteer leadership development, and participant experience. The Manager will build and strengthen peer-to-peer fundraising programs, recruit and mentor volunteer leaders, and develop sustainable event committees that drive both financial growth and community engagement year over year.

In addition to event leadership, the Community Development Project Manager plays a critical role in strengthening and expanding HDSA’s local presence. This includes supporting chapters and affiliate volunteers through onboarding, training, governance alignment, and leadership development; cultivating new markets and partnerships; and serving as a connector between fundraising and mission programming The contract position requires a strategic thinker who can balance revenue generation with community support, ensuring that every initiative advances HDSA’s mission, volunteer infrastructure, and long-term organizational growth.

Scope of Services

Event Planning & Execution

· Serve as the primary point of contact for regional volunteer leaders and committees hosting HDSA fundraising events.

· Manage logistics and planning for Team Hope Walks, Runs/Rides, Galas, and Dinners, ensuring events meet fundraising and attendance goals.

· Coordinate with vendors, venues, sponsors, and volunteers to ensure successful event execution.

· Oversee event registration platforms, donor tracking, budgeting, and reconciliation.

· Maintain consistent branding and mission alignment across all event communications and materials.

Fundraising & Sponsorships

· Support volunteer leaders in identifying and securing local sponsors and donors.

· Develop strategies to increase individual and team fundraising participation.

· Assist in the promotion of events through community outreach, local media engagement, and collaboration with the national marketing team.

Volunteer & Chapter Support

· Serve as a resource to existing HDSA chapters and affiliates, offering guidance and capacity- building support for their events and outreach initiatives.

· Facilitate training and engagement for new and current volunteers involved in events or chapter development.

· Collaborate with the National Team to promote and share best practices across market areas and regions.

New Market Expansion

· Identify and cultivate relationships in untapped or underserved geographic regions with the potential for event growth or new volunteer chapters.

· Develop and nurture partnerships with community stakeholders, healthcare providers, and local businesses.

Support additional regional, chapter, or event-related projects as directed by the RDO

Qualifications:

The successful candidate will meet the following qualifications:

· Bachelor’s degree from an accredited four-year college or university required.

· 3-5 years experience in event management, nonprofit fundraising, or volunteer development.

· Proven ability to work independently while managing multiple priorities and deadlines.

· Strong communication, organizational, and interpersonal skills.

· Experience working with CRM and event registration platforms (e.g., Classy, Blackbaud, or similar) and peer-to-peer fundraising.

· Willingness to travel occasionally for onsite event support, trainings and HDSA Education Days.

· Strong experience in peer-to-peer fundraising and special event management

· Proven success in volunteer development and community organizing

· Ability to build sustainable volunteer committees and leadership pipelines

· A passion for HDSA’s mission by expanding access to support, education, and resources for families impacted by Huntington’s disease

· Contractor to have necessary Equipment (Laptop/Cellphone/Wi-Fi – and Home Office)

Apply here: https://www.indeed.com/job/community-development-project-manager-70f5913874ca331d

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) Florida (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: $ 35 per hour

Hours offered are: 10 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 (Charity Tracker) 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 Ring Central 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) 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) 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.