Thank you for wanting to help us achieve our goals! Let’s work together.

Treasurer. Work closely with the board president and secretary to create the overall budget and budgets for specific programs, overhead, labor costs, and administrative expenses. Work with a bookkeeper to provide monthly and annual financial reporting. Qualifications include:

• Ability to provide organizational leadership to help the organization grow and develop strategies that expand its reach,
• Verbal and written communication skills to write descriptive financial reports and better collaborate with other board members,
• Financial expertise,
• An understanding of the nonprofit’s mission and vision,
• Fundraising and resource development skills,
• Proficiency with QuickBooks and Excel.

Secretary. Primary responsibility is to generate agendas/minutes for/from board meetings. Meetings are held by Zoom and recorded with AI companion. An effective board secretary:

• communicates clearly and openly with board members,
• is highly organized,
• upholds confidentiality and ethics,
• should have a higher level of understanding of the nonprofit’s mission to easily provide strategic information to other board members,
• is comfortable continuously learning and using technology.

Estimated time requirement: varies

Mailer. Join a team of volunteers that sends out professionally printed brochures and quick-reference knowledge cards. You will receive materials for distribution as well as clear instructions. Must be able to use an online spreadsheet, similar to Excel. Estimated time requirement: less than 1 hr/month

Materials Coordinator. You will be in charge of managing inventory and distribution to volunteers. Must be able to work with a graphic designer and coordinate printing as required. Must be able to use an online spreadsheet, similar to Excel. Estimated time requirement: less than 1 hr/month

Work with us to improve the experience the MdDS community has with healthcare providers. At present, our need is lead generation. We must find young doctors/researchers to replace those who have retired. We also maintain a large database of professional contacts to keep educated and made aware of new developments. If you can help get MdDS included on medical school curricula, please contact us.
Volunteer tasks/requirements are as follows:
• adhere to our Mission and Goals and represent the MdDS Foundation in all communications
• make phone calls
• mail educational packets (brochures, pre-written outreach letters, etc.)
• must be comfortable using a spreadsheet program such as Excel

Estimated time requirement: discretionary

Join our Registry Advisory Board as a Patient Ambassador. The primary purpose of the Advisory Board is to review plans for the data to be collected in the registry and to provide recommendations or advice regarding the scope of the planned registry. As a Patient Ambassador on the board you will look at the plans/actions of the survey, from the perspective of a patient, and offer comments. You will work with clinicians, researchers, MdDS Foundation board members, and other Patient Advocates. Estimated time requirement unknown; commitment over the long-run, months+, is required.

This is a great opportunity for you as a Patient Ambassador. Add your voice to ours and help bring MdDS to the forefront. To maintain our top Google ranking, we need regular quality blog and social media posts, content that provides value to our various audiences (general public, patients, and healthcare professionals). Whether from a patient or caretaker perspective, you will contribute efforts to educate the general public, raise awareness, and garner support for our cause through social media sharing. Must be versed in the Instagram, Facebook, Twitter and YouTube platforms. The ability to expand our reach to traditional media is desired. Estimated time requirement: 5 hrs/month

Are you Type-A and like to be organized? We need a Project Manager to keep us on track to success. The Project Manager will monitor all volunteer activity and ensure projects move forward. Typical projects include educational brochure, newsletter, awareness campaigns, and fundraising campaigns. Highlights of our editorial calendar include Rare Disease day in February, MdDS Awareness Month (June) and Giving Tuesday in November. With several projects going on simultaneously, efforts need to be timely and coordinated within both our support groups and all our social media channels (Instagram, Facebook, Twitter, YouTube).

Estimated time requirement: 5 hrs/month, more during big campaigns