The United Multiple Sulfatase Student Ambassador Program, focuses on developing patient advocacy skills and bringing awareness to Multiple Sulfatase Deficiency, a rare neurodegenerative genetic condition.
The Student Ambassador Program is a wonderful opportunity for individuals who are interested in networking with other driven and passionate students and those who are interested in learning more about patient engagement and advocacy.
We are thrilled to announce that applications for our third cohort of Student Ambassadors are NOW OPEN and will close on August 18th, 2023. You can read more about the program and information on how to apply below.
If you have any questions, please contact Brenna Bentley at bbentley@unitedmsdfoundation.org
We look forward to receiving your application!
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What is MSD?
Multiple Sulfatase Deficiency (MSD) is an ultra-rare neurodegenerative genetic condition
affecting families around the world. Children with MSD will experience multi-systemic symptoms
and eventually require 24-hour care. A tight-knit community of families, researchers, providers,
and advocates are working diligently to develop treatments for these children.
United MSD Foundation (UMSDF) Student Ambassadors Role Overview
Student Ambassadors are a group of engaged advocates bringing new voices, ideas, and
passion to the UMSDF while providing amplification and awareness of our efforts. Student
Ambassadors have the opportunity to be at the forefront of understanding and treating
genetically based conditions. The role and activities of each Student Ambassador will be unique
to their strengths, knowledge, network, and interests.
MSD, like other ultra-rare diseases, faces a general lack of public awareness. In order for
individuals to care about MSD and support the cause, they must first know that it exists. The
number ONE thing needed to get treatment options to our children as fast as possible is the
FUNDING to push them beyond research and into clinical application. The MSD Foundation
Student Ambassadors program exists to expand the reach of our efforts nationally by engaging,
educating, and leveraging the commitment, connections, and passion of MSD families,
healthcare professionals, and supporters.
Project Examples from Previous Student Ambassador Classes
● “What is MSD” presentation to groups in their respective communities
● Deep dive into the newborn screening process in all 50 states
● Creation of resources, such as flyers, targeted to MSD families
● Participation in the annual Zebra Run fundraiser
● Participating in Legislative Advocacy
● Communication with Foundation donors
● Attendance at quarterly Science Calls to hear the latest in MSD Research
Foundation Student Ambassadors will be asked to:
● Publicly endorse the MSD Foundation and serve as advocates for our efforts
● Amplify our social media presence through shares, likes, and engagement
● Advise on efforts specific to each member’s background and area of expertise
● Open doors and make introductions when available and as needed; and
● Support the United MSD Foundation financially if and as able.
Ideal candidates:
● A student is defined as anyone who has not yet completed their terminal degree
(undergraduate students, students in a gap year(s), individuals still in professional
school)
● Individuals who are pursuing a career in a healthcare field or research
● Individuals who are pursuing a career in nonprofit management, marketing,
communication, or a related field
● Supporters who have a passion for rare diseases and patient advocacy
● Motivated, self-starter with big ideas
● Eager to learn and apply what they will learn in their own communities
● Individuals with positive attitudes
● Provide advice, inspiration, and guidance to our efforts in collaboration with the UMSDF
Staff members
Time Commitment
MSD Foundation Student Ambassadors Program is a one-year commitment with the option
to extend for 1 additional year or through completion of their terminal degree. Student
Ambassadors are expected to spend 5 hours a month on UMSDF activities. Additional
opportunities and commitments may be presented to students on an optional basis, these will
likely carry additional time commitments. Students will spend time engaging with their
communities and sharing awareness about MSD outside of the meetings described above.
Apply Today!
Complete the application by 5:00 PM CST on August 18, 2023
1. Application: https://forms.gle/6WBeDKc1RhWux4W48
a. The application includes the required upload of a resume/CV
2. Applicants will receive communication about the next steps by August 28, 2023
Questions?
Please feel free to reach out to Brenna Bentley, MS, CGC with any questions!
bbentley@unitedmsdfoundation.org
For more information, contact: Stephanie Schofield at stephanie.schofield@uconn.edu