Careers

Reports To:         President & CEO

Location:             This position can either be based in our NYC office or may be a full telecommuter.  NYC based staff currently work 3 days in office/2 days remote.

Status:                  Exempt, full-time

Salary:                  The offered annual salary for this position will be in the range of $175,000 – $225,000 depending on location, experience and other factors.  Exceptional applicants with higher salary requirements may be considered.  Please tell us your salary requirements in your cover letter.                    

Position Description:  The CDFO will report to the President & CEO and is responsible for the overall strategic direction and execution of HDSA’s fundraising and field operations. The Chief Development & Field Officer will lead the development and implementation of comprehensive fundraising strategies to secure diverse funding streams, while also overseeing and supporting the network of chapters and affiliates to maximize their impact and engagement within the HD community. This role requires a dynamic and experienced leader with a proven track record in non-profit fundraising, relationship building, and field operations management.

The CDFO supervises the development team and regional development officers and is a member of HDSA’s Senior Leadership Team.

Position Details

Development (Fundraising):

• Strategic Fundraising Planning: Develop and implement a comprehensive, diversified fundraising plan encompassing individual giving, major gifts, corporate partnerships, foundation grants, planned giving, special events, and online fundraising. Establish best practices and foster innovation.
• Revenue Generation: Establish a culture of philanthropy across the organization. Oversee all fundraising activities and ensure the achievement of annual revenue goals. Monitor progress, analyze results, and adjust strategies as needed.
• Donor Cultivation & Stewardship: Develop and implement strategies for identifying, cultivating, soliciting, and stewarding donors at all levels. Build and maintain strong relationships with key donors and prospects. Oversee a portfolio of donors to cultivate and steward 6, 7 and 8 figure gifts. Partner with the President and CEO, Board of Trustees, and Development Committee to engage and steward donor relationships.
• Grant Management: Oversee the research, preparation, submission, and reporting of grant proposals to foundations, corporations, and government agencies.
• Fundraising Operations: Supervise fundraising staff, manage budgets, oversee donor database management, and ensure compliance with all fundraising regulations.
• Special Events: Provide strategic guidance and support for fundraising events, ensuring their success and alignment with overall fundraising goals.
• Reporting & Analysis: Prepare regular reports on fundraising progress, including key metrics, analysis of results, and recommendations for improvement. 

  Field Operations (Chapters & Affiliates):

  • Chapter/Affiliate Support: Provide strategic guidance, training, and resources to chapters and affiliates to support their growth and effectiveness.
  • Network Management: Oversee the network of chapters and affiliates, fostering collaboration and communication among them.
  • Chapter/Affiliate Development: Develop and implement strategies for expanding the reach of the organization through the establishment of new chapters and affiliates.
  • Compliance & Accountability: In collaboration with the Operations team, ensure that chapters and affiliates operate in compliance with HDSA policies and procedures.
  • Performance Monitoring: Establish metrics and monitor the performance of chapters and affiliates, providing feedback and support for improvement.
  • Field Staff Management: Supervise all field staff, including RDO’s, and provide leadership and direction.
  • Community Engagement: Work with chapters and affiliates to engage the HD community and raise awareness about HD.

   

  Leadership & Management:

  • Team Leadership: Provide strong leadership and supervision to development and field operations staff, fostering a positive and productive work environment.
  • Budget Management: Develop and manage the budgets for development and field operations, ensuring responsible use of resources.
  • Collaboration: Collaborate effectively with other departments within HDSA to achieve organizational goals.
  • Strategic Thinking: Contribute to the overall strategic planning of the organization.
  • Communication: Communicate effectively with the CEO, Board of Directors, staff, volunteers, donors, and other stakeholders.

   

  Qualifications:

  The successful candidate will be a seasoned leader with at least 15 years of broad non-profit development (fundraising) and field management experience, including developing and implementing innovative and sustainable fundraising initiatives, with a growth-minded set. The candidate will have experience managing and developing field staff and volunteers for a national nonprofit.  Specifically, they will meet the following qualifications:

   

  • Passion for Society’s mission, demonstrated commitment to the non-profit sector, and a commitment to serving the HD community.
  • Excellent people skills, with experience collaborating in a multi-disciplinary, diverse, and dynamic team.
  • Bachelor’s degree required; Master’s degree preferred.
  • Minimum of 15 years of progressive experience in non-profit fundraising and field operations management.
  • Proven track record of success in raising an annual fundraising budget of $10M+ including securing significant funding from diverse sources.
  • Must have personally secured 6,7 or 8 figure gifts from donors.
  • Experience working with a network of chapters or affiliates.
  • Demonstrated effective leadership, management, and interpersonal skills.
  • Strong commitment to developing team members.
  • Ability to think strategically and develop and implement effective plans.
  • Knowledge of fundraising best practices and regulations.
  • Technologically savvy, with experience working in CRMs/donor databases. An ability to point to examples of having worked with IT staff to develop and implement new processes and systems that increased efficiency in a fast-moving environment.
  • Flexible and a self-starter; able to multi-task while also being highly detail oriented.
  • Personal qualities of integrity, credibility, and a commitment to Society’s mission.
  • An effective communicator, with strong oral and written skills.
  • Energetic team player who will fit seamlessly into a small organization that is driven to accomplish its mission.
  • Flexible and adaptable style; a leader who can positively impact both strategic and tactical fundraising initiatives.
  • Willingness to travel as needed.

At HDSA, we are on a mission to support families affected by Huntington’s disease and rid the world of this devastating brain disorder. In order for us to continue our crusade against HD, we seek HONEST, COMMITTED and RESPECTFUL staff members that put HD FAMILIES FIRST and are ready to COLLABORATE with this dynamic team. In the battle against HD, no one fights alone. At HDSA, Family Is Everything!

Join the #HDSAFamily to give meaning to your career and let your skills, personality and vision make a difference in the lives of HD families.

We offer excellent benefits, as well as a terrific team and community with which to work!  HDSA is an equal opportunity employer and committed to diversity.

Please visit: https://www.indeed.com/q-huntingtons-disease-society-jobs.html?vjk=35b1f1080da41b46 to submit cover letter & application.

Title:                       HDSA New Jersey Chapter Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $45 per hour

Hours offered are: 22 hours per month

*Applications without a cover letter will not be considered*

Position 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) Washington Chapter (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.

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 and the Manager, Youth & 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 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

Title:                       HDSA Central Ohio Chapter Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $32 per hour

Hours offered are:  40 hours per month

*Applications without a cover letter will not be considered*

Position 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) Washington Chapter (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.

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 and the Manager, Youth & 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 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

Title:                       HDSA Nevada Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $30 per hour

Hours offered are:  20 hours per month

*Applications without a cover letter will not be considered*

Position 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) Washington Chapter (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.

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 and the Manager, Youth & 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 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