Careers

The Batten Group Executive Search & Consulting, Inc., a premier national executive search and consulting firm specializing in nonprofit, healthcare, higher education, and mission-based philanthropy, has been retained as the exclusive search partner in this national search for a Chief Executive Officer.

All inquiries, nominations, and applications should be directed to Jim Batten, President, of The Batten Group.

Jim Batten
james@thebattengroup.com
704.651.7858

President and Chief Executive Officer

About Huntington’s Disease Society of America (HDSA)

The Huntington’s Disease Society of America, the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease space, was founded in 1967 by Marjorie Guthrie, widow of folk legend Woody Guthrie, who succumbed to Huntington’s disease. Initially established as the Committee to Combat Huntington’s Disease (CCHD), the organization became HDSA in 1983. Huntington’s disease (HD) is a genetic order causing progressive nerve cell dysfunction and eventual death. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline. There are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Marjorie’s vision for HDSA was to provide hope and support to families affected by HD, advocate for research and treatments, and raise public awareness. Ending her correspondences with “Love and Peace”, HDSA continues her legacy by funding research, offering resources and support, and through the HDSA Centers of Excellence across the country.

Through the dedicated efforts of the HDSA national staff and network of amazing volunteers who lead chapters and affiliates, the organization strives to achieve their mission to improve the lives of everyone affected by Huntington’s disease and their families and to realize their vision of a world free of Huntington’s disease. HDSA funds research with the goal of discovering effective treatments to slow Huntington’s disease and eventually lead to a cure. The HDSA Centers of Excellence program provides a multidisciplinary team approach to Huntington’s disease care. There are currently 56 HDSA Centers of Excellence and 11 Partner Sites covering 36 States plus the District of Columbia.

Position Summary

The Chief Executive Officer will report into and work collaboratively with the Board of Trustees, leading the HDSA staff and delivering on its short-term strategies and long-term vision. Specifically, the CEO will ensure that HDSA’s fiscal, operational, fundraising, marketing, human resource, research, technology, and programmatic goals are effectively prioritized and implemented across all segments of the national organization.

Position Duties and Responsibilities

The major responsibilities of this position include, but are not limited to:

Mission Impact

The CEO is responsible for advancing the HDSA’s mission of  “improving the lives of everyone affected by Huntington’s disease and their families” on the path to our vision of a world free of HD. This will be achieved by managing our pillars of Care, Community and Cure through the funding of research, programs and education, while leading the HDSA staff. The CEO works closely with the Board to craft and adapt the strategy to achieve this increased impact, including raising the funds to support it. With the support of their team, the CEO will establish and build relationships with top leaders in the business, scientific and philanthropic communities. The CEO also engages the community to get involved in research, providing community to each other, educating and reducing the stigma of HD

Resource Development

The CEO is charged with driving key results in fundraising; providing oversight in the identification, cultivation, and solicitation of prospective donors and corporate partners; leveraging personal and professional contacts and relationships into fundraising opportunities; and promoting a culture of fundraising at the staff and board levels.

Strategic Management

The CEO serves as the principal resource to the Board of Trustees and its key committees and gives strong direction in policy formulation and interpretation. The CEO will partner with the Board of Trustees and the staff leadership team to craft organizational goals and develop strategies to ensure that they are achieved.

Organization Management

The CEO is accountable for building high-performing teams, ensuring all teams are aligned and collaborating to achieve organizational results. They maintain accountability for the operational and fiscal integrity of the organization within policies set by the Board of Trustees. The CEO assesses organizational capacity and identifies gaps in systems and staffing; directly supervises Senior Leadership positions and establishes individual goals; works with the Chief Operating Officer to manage organizational spending, monitors budget compliance, and mitigates financial risks. The CEO will prioritize the initiatives and efforts of the organization to achieve significant goals as outlined by the strategic plan and guidance of the Board of Trustees. Finally, the CEO will lead the organization in building consensus, continuity, and a strong culture of “One HDSA” to ensure mission alignment with our national office and across our Chapters and Affiliates.

Position Requirements

• Charismatic leadership combined with comprehensive management ability.
• A passionate sense of urgency to boldly move the HDSA mission forward.
• Relevant understanding of the nonprofit sector and interacting with diverse constituencies and boards.
• Expertise on issues relevant to the HDSA, including philanthropy, research, programs, advocacy, financial and nonprofit management.
• Extensive senior strategic leadership experience in the management of organizations of comparable size and mission.
• Excellent ability to communicate including public speaking
• Ability to earn the confidence and respect of stakeholders.
• A track record of building collaboration with internal and external stakeholders.
• Experience across multiple sectors, including nonprofit, public, and corporate environments.
• Experience in developing partnerships and building teams
• Experience in revenue generation and increasing philanthropic support.
• The intellectual horsepower and intellectual curiosity necessary to explore new ideas and innovative approaches to goal management and problem resolution.
• Unimpeachable integrity; a strong work ethic and sense of accountability; managerial courage and strong decision-making skills.

Candidate Qualifications

• Outstanding presentation and communication skills and the experience and proclivity to be an engaging spokesperson, relationship builder and fundraiser.
• A financially savvy and politically astute leader with the ability to set clear priorities, delegate, and guide investment in people and systems; keen analytic, organization, and problem-solving skills, which support and enable sound decision-making.
• Excellent coalition-building skills with an ability to communicate and work effectively with a variety of internal and external stakeholders; a persuasive negotiator able to achieve consensus amongst differing opinions.
• Significant board development, fundraising, marketing/branding, and fiscal management experience.
• Strong commitment to the professional development of staff; successful track record of development and retaining a diverse team.
• Prior relevant nonprofit experience ideal; management of a scientific, programmatic and/or research related voluntary health organization preferred.
• Proven professional experience.
• Minimum of a bachelor’s degree, ideally with an MBA, MPH, or related advanced degree.

POLICY ON PLACEMENT AND RECRUITMENT

The Batten Group and Huntington’s Disease Society of America are equal opportunity employers committed to the principles of non-discrimination in the workplace. Candidates will not be discriminated against based on age, race, creed, color, religion, sex, sexual orientation, national origin, disability, marital status or any other basis that is prohibited by federal, state, or local law.

Title:              Assistant Director, Research and Patient Engagement

Reports to: Chief Mission Officer

Status:          Exempt, full-time

Salary:          The offered annual salary for this position will be in the range of $90,000 – $105,000, depending on location, experience and other factors.

Position Description:

The Assistant Director, Research and Patient Engagement will work closely with all members of HDSA’s Mission Team to understand and integrate the family perspective into all clinical research and therapeutic development opportunities for Huntington’s disease (HD). This includes managing HDSA’s research initiatives through oversight of scientific funding programs and developing and implementing research communications directed towards HD families and professionals. In addition, this individual will serve as HDSA’s primary contact for the HD Coalition for Patient Engagement (“HD-COPE”), an international collaboration to strengthen the role of families in HD pharmaceutical development.

Position Responsibilities:

Research

• Partner with Mission team staff to ensure key research grant programs (i.e.: Human Biology Project, Don King and Berman-Topper Fellowships) meet timelines and objectives.
• Organize and prepare HDSA research communications, including weekly blog posts, scheduled webinars, and annual research publication The Marker.
• Maintain ongoing communication with HDSA staff, HD researchers and clinicians, and corporate partners in the HD space to strengthen clinical research resources.
• Assist in preparing grant and other funding and sponsorship applications to support research and programmatic efforts.
• Represent HDSA at key scientific and patient-focused meetings.
• Coordinate and collaborate with other HD organizations that may seek to raise awareness about ongoing HD research.

Patient Engagement

• Serve as HDSA’s primary external point person for HD Coalition for Patient Engagement, managing corporate and academic projects with the HD-COPE team.
• Coordinate HD-COPE partner organizations on all activities, including communication, logistics, skill development and team recruitment.
• Moderate patient and caregiver advisory board meetings with sponsors as needed.
• Prepare reports when requested by advisory board sponsors to summarize patient feedback.
• Create and manage project timelines, budgets and grant proposals for HD-COPE and related programs.
• Develop digital and social media marketing strategy and materials to increase awareness of clinical trials among people affected by HD.
• Analyze key performance indicators and provide reports on HDSA patient engagement impact.

Other

• Manage junior Mission Team staff to ensure projects (including patient engagement, research programs, and scientific communications) adhere to objectives, timelines, and budgets.
• Serve on HDSA’s National Convention Program Development Committee.
• Manage HD TrialFinder, including content management and coordination with trial sponsors.
• Conduct ongoing needs assessment to understand changing needs and perspectives among stakeholders regarding enrollment in clinical trials and engagement among the HD community.
• Perform all other duties and tasks, as assigned by the Chief Mission Officer, in order to support the programs, services and revenue generation capabilities of HDSA.
• Maintain extensive awareness of HDSA’s constituents, programs, features and benefits.

Qualifications:

• Passion for HDSA’s mission and demonstrated commitment to the non-profit sector and patient population.
• Minimum of 5 – 7 years of professional work experience required.
• A Bachelor’s degree (or equivalent)) in life sciences from an accredited university is required.
• An advanced degree (MS, PhD, or PharmD) in the fields of health communications, health science, public health, health advocacy or health education is preferred.
• Knowledge of Huntington’s disease and/or other rare diseases is preferred.
• Experience translating and communicating complex scientific and medical information in understandable language to educate all constituencies of the organization.
• Experience with or familiarity with clinical trials.
• High proficiency in English with excellent oral and written communication skills, as well as organizational skills.
• Superb interpersonal skills and collaborative style.
• Must possess a high level of independence in accomplishing the responsibilities of the position and meet deadlines with flexibility, attention to detail, and good humor.
• Experience presenting in public and virtual formats.
• Computer proficiency (e.g., Microsoft Outlook, Office, Word, Excel, PowerPoint), including experience working from home/telecommuting
• Willingness to travel, as well as able to work a flexible schedule, including evenings and weekends.

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 with which to work!  HDSA is an equal opportunity employer and committed to diversity.

To apply, please click here.

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