Mendham, NJ – June , 2025 – Pathways To Trust, a rare disease nonprofit patients advocacy organization, in collaboration with Maplewood Strollers, is pleased to present George Wolf’s electric play, The Colored Museum, 555 Valley Road, West Orange, NJ, (the at Luna Stage building) on Wednesday, June 25, 2025. The show is directed by Victoria Duncker with musical direction by Ebony Wiggins.
​
The multiple challenges faced by patients with Sickle Cell Disease is a main focus of Pathways To Trust. These patients encounter enormous barriers to accessing appropriate care because not only is SCD a rare disease with limited knowledge about symptoms and treatment among healthcare professionals, but the majority of Americans with this condition are African-American who face systemic racial bias. The Colored Museum addresses these biases and is therefore the perfect backdrop that underscores the organization’s mission. Similarly, the art of rare disease patients and the works of local artists of color also puts a spotlight on the challenges faced by patients of color with rare diseases.
The evening will begin with a cocktail reception at 6:30 pm during which art created by rare disease patients, particularly those with Sickle Cell Disease, and prominent local African-American artists will be displayed. The play will be performed at 8:15 pm, followed by a talk-back with the director and actors.
​
The Colored Museum debuted at Crossroads Theater in New Brunswick, NJ, in 1986. This groundbreaking play is a provocative and satirical play by George C. Wolfe that explores African American identity and culture through 11 "exhibits" or sketches. According to Ms. Dunker, “The play addresses complex themes such as slavery, stereotypes, Black identity, and generational trauma, using humor and satire to challenge perceptions and provoke thought.”
The visual art experience, curated by Zakiyyah Williams (@curatedbynorth), will feature creations by patients with Sickle Cell Disease and other rare diseases who use the creative process to help manage chronic pain. The exhibit will also honor trailblazing artists whose work has shaped Newark’s and the nation’s creative legacy, including the late Jerry Gant (honored by Linda Street), Cathy McCoy Bristol, and Cassandra Martin.
​
Tickets are on sale now at www.pathwaystotrust.org/tickets for $65 per person, and include the cocktail hour, art exhibit, performance and post-performance talk-back.
Pathways To Trust
Pathways To Trust is a 501c(3) organization whose mission is to bring the rare disease patient's needs to the center of provider, institutional and industry healthcare treatment goals. Our primary focus is currently Sickle Cell Disease, although we have delivered programs addressing other conditions and rare diseases. Pathways To Trust professional patient advocates design and lead customized educational events to meet the multi-dimensional, real-world validated needs of rare disease patients. Our programs include information about pathophysiology and treatment, but go beyond the clinical to encompass the emotional, social/behavioral and financial issues that complicate living with a chronic rare disease as a member of an underserved population.
MAPLEWOOD STROLLERS AND PATHWAYS TO TRUST TO PRESENT
THE COLORED MUSUEM
BY GEORGE WOLF
COME VISIT PATHWAYS TO TRUST AT THE
WORLD ORPHAN DRUG CONGRESS – USA IN BOSTON
Pathways To Trust is excited to be going to the upcoming World Orphan Drug Congress (WODC) – USA, in Boston, April 22-24! We hope you will come visit us at Booth #627 on the exhibit floor, and sit in on one of the panel discussions we are participating in. Our participation in WODC – USA will help us deliver on our mission is to bring the needs of the rare disease patient, particularly individuals with Sickle Cell Disease and Ehlers-Danlos Syndrome, to the center of provider, institutional and industry healthcare treatment goals.
​
Board of Directors member Tina Karunaratne will moderate the panel discussion, “Patient Perspective of Ehlers-Danlos Syndrome: From Diagnosis to Daily Life: The Long Road to Recognition and Support,” which will feature Pathways To Trust Patient Advocacy Director Donna Sullivan as a panelist. This fireside chat format discussion will address multiple obstacles to care that patients face including misdiagnoses and access to care, as well as the role of patient advocacy in meeting the needs of patients and caregivers. “I am privileged to be part of WODC-US,” Ms. Karunaratne stated. “It is inspiring to see the global community come together to address the challenges faced by patients affected by rare diseases. I believe that together, we can drive change and improve the lives of people living with rare diseases.”
​
Ms. Sullivan will also be a featured panelist in the discussion, “Bridging the Gap: The Rare Disease Media Landscape and Industry Partners.” This event will explore the impact of storytelling and how media creators play a valuable role in enhancing the patient experience and fostering a deeper understanding of the more personal, unmet needs and challenges that patients navigate. As a rare disease mom and seasoned patient advocate who watched the system fail and traumatize two of my three kids and countless others,” said Ms. Sullivan, “I feel extremely lucky to be part of this discussion as we propose and encourage industry to consider the important role content creation and the media play in helping to gather insights and better understand the unmet needs of rare disease families. Healthcare media is growing and provides innovative, creative new opportunities to empower both patients and providers to work together towards better health outcomes.”
​
You will be able to meet these individuals as well as other members of our team on the exhibit floor at Booth #627 where we will reprise, at the request of the WODC, the popular “Getting Our Ducks In a Row for Rare Disease” activity. We are inviting those who stop by to spin our Rare Duck Wheel, generously provided by Boston Casino Rentals, for the chance to win prizes. Winners are asked to take selfies of themselves with their “winning rare duck” in various locations throughout the WODC event space and post on social media, using the hashtag #quackforrare. Visit Instagram, Facebook and LinkedIn starting April 22 to follow the excitement.