Summary
Overview
Work History
Education
Skills
Timeline
Generic

Jennifer Endres

Yarmouth Port,MA

Summary

Passionate and dedicated patient advocacy professional with a strong commitment to supporting families and caregivers affected by rare diseases, particularly Rett syndrome. Skilled in building meaningful relationships within the rare disease community, fostering connections between families, healthcare providers, and advocacy organizations.

Overview

24
24
years of professional experience

Work History

Family Resource Manager

Rett Syndrome Research Trust
01.2018 - 01.2023
  • Built trusting relationships with families and caregivers through active listening and empathy.
  • Empowered families by providing tools and resources to support informed decision-making.
  • Advocated for families to ensure access to appropriate educational services and medical care.
  • Helped identify community programs and resources for families affected by Rett syndrome.
  • Authored blogs offering practical guidance on special needs travel, complex surgeries, hospital stays, and related medical challenges.
  • Led social media strategy to share research updates, promote events, and highlight family involvement.
  • Coordinated community outreach events to raise awareness and funds for Rett syndrome research.
  • Maintained and updated CRM records to support clear, consistent communication across all stakeholders.

Community Engagement Manager

International Rett Syndrome Foundation
06.2006 - 06.2018
  • Developed targeted outreach strategies to engage families affected by Rett syndrome, addressing their unique needs and concerns.
  • Assessed family engagement initiatives using data-driven approaches to evaluate effectiveness and identify opportunities for improvement.
  • Maintained detailed records of family engagement activities; analyzed participation trends to guide future programming.
  • Drove fundraising efforts by mobilizing families to support the mission through a range of large-scale and grassroots events.
  • Planned and executed community events to strengthen relationships among families, students, and staff.
  • Founded and scaled the Regional Rep Program, recruiting and training 55 representatives across the U.S. to serve as local points of contact.
  • Led Regional Rep engagement through weekly check-ins, social media oversight, resource sharing, and consistent alignment with IRSF messaging.
  • Established dedicated peer networks for dads, grandparents, and siblings to foster connection, support, and long-term engagement with the organization.
  • Facilitated monthly meetings, moderated social media groups, and provided ongoing consultation to peer networks with the goal of deepening mission alignment and fundraising participation.
  • Co-planned national conferences, leading breakout sessions, workshops, and evening events to strengthen community bonds and knowledge-sharing.


Special Education Math Teacher

Eddy Elementary School
09.2003 - 12.2005
  • Boosted student confidence in problem-solving by providing individualized support and targeted feedback during tutoring sessions.

Teacher

Mystic Valley Regional Charter School
07.1999 - 06.2003
  • Developed strong relationships with students, parents, and colleagues by maintaining open lines of communication and fostering a supportive learning environment.
  • Managed classroom behavior effectively by establishing clear expectations, modeling appropriate conduct, and consistently enforcing established rules and consequences.


Education

Master of Arts - Education

Cambridge College
Cambridge, MA
06-2002

Bachelor of Arts - Education

Keene State College
Keene, NH
12-1998

Skills

  • Relationship building
  • Resource identification
  • Community engagement
  • Event organization
  • Healthcare navigation
  • Decision-making support

Timeline

Family Resource Manager

Rett Syndrome Research Trust
01.2018 - 01.2023

Community Engagement Manager

International Rett Syndrome Foundation
06.2006 - 06.2018

Special Education Math Teacher

Eddy Elementary School
09.2003 - 12.2005

Teacher

Mystic Valley Regional Charter School
07.1999 - 06.2003

Master of Arts - Education

Cambridge College

Bachelor of Arts - Education

Keene State College

Similar Profiles

CREATE PROFILE