Are you newly diagnosed?
Learn More

Volunteer

Volunteers are an important part of the work we do and allow us to maximize our capacity as a small nonprofit. In addition to our Board and committees, following are a few key volunteer programs.

Student Ambassador Program

Launched in 2021, the UMSDF Student Ambassador program brings together a group of engaged advocates from around the United States to learn about Multiple Sulfatase Deficiency and bring awareness to their communities. Each Student Ambassador has the opportunity to participate in a number of committees and take on independent projects based on their strengths, knowledge, network, and interest.

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  

The Student Ambassador Program is open to anyone who has not yet completed their terminal degree (undergraduate students, students in a gap year(s), individuals still in professional school). The application period is in August.

Student Ambassadors

Omolola “Lola” Akinsola

New York, USA

Taliyah James

New York, USA

Emily Arbuckle

Mississippi, USA

Maison Guerra

Texas, USA

Kelci Hill

California, USA 

Jess Iller

Pennsylvania, USA

Taliyah James

Maryland, USA

Caylin Le

North Carolina, USA

Ashley Lira-Rivera

Tennessee, USA

James McCaw

Florida, USA

John-Michael Mendez

New York, USA

Katy Meta

Pennsylvania, USA

Aly Pennell

Ohio, USA

Emily Gaines Sandlin

Alabama, USA

Lianna Schubert

New Jersey, USA

Malaika Vaz

Ohio, USA 

Holland Whitaker

Florida, USA

Michael Yang

California, USA

Our re-launched Professional Ambassador program is a great way for those who love the Foundation’s mission to get more involved. This program pulls working professionals from across the U.S. and abroad to strengthen the Foundation’s network and grow awareness of MSD and our mission. 

As a Professional Ambassador, you will receive:

Our re-launched Professional Ambassador program is a great way for those who love the Foundation’s mission to get more involved. This program pulls working professionals from across the U.S. and abroad to strengthen the Foundation’s network and grow awareness of MSD and our mission. 

As a Professional Ambassador, you will receive: 

  • Insider updates about the work of the Foundation 
  • Invitations to Scientist Calls to learn about recent research efforts 
  • An invitation to an Ambassador-only virtual networking event Coffee & Convo w/ the E.D. 
  • Special organizational swag 
  • A LinkedIn badge to show off your role as a Professional Ambassador 
  • Customized engagement leveraging your strengths, knowledge, and network 

In exchange, we ask our Professional Ambassadors to: 

  • Publicly endorse the United MSD Foundation and serve as ambassadors for our efforts throughout your professional and personal networks 
  • Participate in social media campaigns for the annual MSD World Day and Zebra Run for Rare Disease 
  • Participate in Zebra Run for Rare Disease (virtual run/walk option available!) 
  • Open doors and make introductions to potential supporters, when available and as needed 
  • Advise on efforts specific to each Ambassador’s background and area of expertise  

Does this sound like the perfect volunteer and engagement opportunity for you? Send us an email and let’s chat! 

Current Professional Ambassadors

Dawn Agar

Realtor, New Home Star
Mississippi, USA

Kara Anseth

Early Childhood Special Education Teacher, Colorado Springs School District 11
Colorado, USA

Buffy Butler

Managing Director, Nextaff
Florida, USA

Nayeem Choudhury

Clinical Research Project Manager, ICON Strategic Solutions
Texas, USA

Bethanie Mauerman M.Ed., LPC

Kent State University and First Step Recovery
Ohio, USA

John Snellings 

Co-founder and CEO, Nextaff
Colorado, USA

Diane Tucker

Professor Emerita, University of Alabama at Birmingham
Alabama, USA 

Dr. William Van Wurm 

Pediatrician, MS Pediatric Associates
Mississippi, USA

Chisom Pius

Founder, Rare Disease Awareness
Support Foundation

Lagos, Nigeria

Allison Milicia

Genetic Counseling Student, Mount Siani
New York, USA

Zebra Run is a fundraising and community-building event that raises critical funds to further MSD research and family support. There are many ways for individuals to participate in this annual event.

LEARN MORE

Let’s Connect

Connect with MSD families and get valuable information from medical researchers and doctors.