For decades, the National MPS Society has brought families together through conferences, support programs and advocacy initiatives. But as leaders at the organization listened more closely to the community they serve, one reality became increasingly clear in recent years: many families impacted by mucopolysaccharidosis (MPS) and mucolipidosis (ML) were still not being reached.

Two converging factors led to this realization.

By examining data about diagnoses, the National MPS Society figured out that less than 40% of those living with MPS or ML in the United States were engaged with the patient advocacy group. At the same time, the organization’s Pathways Program team had been encountering families facing significant challenges related to geography, language, socioeconomic situations and lack of awareness.

“We’ve always known the importance of getting families and people together,” says Terri Klein, President and CEO of the National MPS Society. “But what if we could bring families together that we didn’t already know – families who may not be members of the Society, who may not be connected in other ways, and who may have more need?”

A new approach to community outreach called Crossing Paths emerged as a response to help proactively find families, listen to their realities, and begin breaking down barriers to care and connection. Rather than waiting for families to find the organization, Crossing Paths brings the National MPS Society into neighborhoods and communities across the country where engagement has historically been the lowest, creating welcoming, local gatherings designed to foster trust and understanding.

More than three years in, the team has held 18 Crossing Paths events across the country that have helped bring additional families into the fold, drive greater equity and contribute to a more holistic understanding about the needs of the community.

“Our biggest learning from Crossing Paths has been that we don’t know what we don’t know. And so we have to listen to the community,” says Leslie Urdaneta, Director of Family Support and Pathways at the National MPS Society. “We have to listen to these families first.”

Building a Different Kind of Gathering

Leslie recalls the idea for Crossing Paths came into focus after one difficult day in the field, during a long drive home. After attending a small, informal gathering meant to connect families, she realized many attendees had never engaged with the National MPS Society before, despite years of support work. The lived experiences they shared and questions they asked went far beyond MPS, touching on food insecurity, transportation, housing and access to care. As she drove back, Leslie called Terri with a realization that would change their approach.

“We had a good handle on the families who called us,” Leslie says. “But there were so many more families we weren’t seeing – not because they didn’t need support, but because something was standing in the way.”

Crossing Paths, which BioMarin has supported since the program began, was designed to help remove some of those obstacles by making connection simple and human. Events are intentionally informal, often held in parks or community spaces, with food, activities for children and time for unstructured conversation. Social workers and other National MPS Society staff meet with families to hear their stories and respond to the needs they hear. Families that are experienced with navigating MPS and well-connected in the community also attend to share their knowledge.

Each Crossing Paths gathering is shaped by the community it serves. Some require interpreters. Others require additional resources or flexibility. No two events look the same – and that adaptability is intentional.

“We want everyone to feel equal in these settings. Each community that we go into for Crossing Paths is not the same,” Leslie says. “We research the community beforehand, but we also remain flexible. The beauty of Crossing Paths is that it changes based on what families need.”

Forming Connections That Endure

The opportunity to continue building relationships with the broader community is what led Angela to drive five hours from her home in Oklahoma to a Crossing Paths event near Dallas with her 15-year-old daughter Carissah, who lives with MPS type VI, also known as Maroteaux‑Lamy syndrome.

In the early days following Carissah’s diagnosis nearly 10 years ago, Angela recalls feeling overwhelmed – not only by the condition itself, but by the uncertainty of what life would look like moving forward. Over time, connecting with the National MPS Society and other members of the community, mostly online, helped the family find information and direction. But moments of in‑person connection proved especially powerful.

“There’s a difference between knowing someone online and really knowing them,” says Angela, who recently became a member of the National MPS Society Board of Directors. “Having someone you can call when things are hard, and being that person for someone else – that matters.”

Jeanette also attended the Texas Crossing Paths event with her 15-year-old son Dominic, who lives with MPS type II, also known as Hunter syndrome. She says the regional nature of the events is especially appealing because of the opportunity to form local connections and informal support networks that endure.

“With Crossing Paths, they’re local families, so they probably see similar doctors,” she says. “I can call any family, I have them on speed dial and I’m like ‘OK, this is what’s going on with my child, what do you think I should do next?’ Getting to know them face to face is what’s really valuable about the Crossing Paths program.”

Opening the Door to Hope

Crossing Paths continues to expand and visit more areas of the country, with events in Seattle, Tulsa and New Orleans planned through the end of 2026. The program reflects a broader commitment to ensure that families do not feel invisible or alone because of where they live or the challenges they face.

“My hope for families who attend is that they meet someone who understands,” Angela says. “That they walk away knowing they’re not in this by themselves.”

Reflecting on the objectives of the program and her own experience as the mother of a daughter with ML, Terri notes how powerful that kind of mindset shift can be.

“When families find community,” she says, “it opens the door not just to support and resources – but to hope.”

This article is the second in a two-part series on the National MPS Society’s community programming. View the first installment here.