Volunteer Job Postings

Current Postings

Title:

Dup15q Alliance State Representative

Position Summary: 

Dup15q Alliance State Representatives are responsible for organizing 1 regional family gathering each calendar year.  Each State Representative will host State Gathering meetings to collect state resources available to families in their state. State Reps will have a general knowledge of where to find the Dup15q Alliance state resources and what resources are listed.

Essential Functions:

• Initiating, coordinating or overseeing at least 1 informal regional gathering each year.
• Recruit one more person to assist in overseeing the regional gatherings.
• Anyone can host a state/regional gathering. We ask the State Rep to ensure a minimum of 1 gathering is hosted per year.
• Be familiar with the Dup15q Alliance website state-specific resources and be able to help guide new members in the navigation of said resources.
• Join at least 1 State Representative phone call during the calendar year.

Dup15q Alliance will support State Representatives by:

• Sending a representative from the Dup15q Alliance to attend, whenever possible.
• Providing food/support grants to any gathering of four or more Dup15q Alliance families to support the cost of food associated with these gatherings. Grants usually start around $250 and the level of financial support will vary based upon gathering type and anticipated attendee number.
• Providing admin support throughout the planning of the gatherings.
• Sending official emails and gathering announcements to the state families. Some states may only have a few families across the state. These families may be invited to a neighboring state gathering.  If the gathering is held close to state lines, neighboring states may be invited.
• Scheduling quarterly calls with the State Reps to assist in any planning and answer and questions.
• Provide Family Gathering guidebook.

Qualifications:

• Must be a registered Dup15q Alliance family or registered extended support.
• Good organizational skills.
• Good communication skills.

If you are interested in this position, please submit an application below.

Apply