On February 28, which is international Rare Disease Day, the Patient Experience Project (PEP) will host its third annual Rare Disease Day at the Movies. The charity event will feature a screening of Wonder, the movie based on the award-winning book of the same name by RJ Palacio, as well as a premovie display of posters by area students that depict kindness and acceptance.
The choice for this year’s movie was inspired by Megan, a local 12-year-old girl with a facial difference. Much like Wonder’s main character Auggie, Megan is an inspiration to others in spite of her medical challenges. Megan was born with an extremely rare contiguous gene deletion synd
rome that manifests mainly as craniofacial syndrome with other components, including a brain abnormality. Megan is a beautiful girl who loves school, spending time with her family and friends, and playing soccer.
“When I approached PEP about getting involved and suggested Wonder as this year’s Rare Disease Day movie, I never imagined we would start this movement of kindness,” said Megan’s mother, Angela. “The outpouring of support by PEP, teachers, students, and countless people in the community has been incredible so far.”
PEP’s Project Kind
Hundreds of students from 5 schools in New York’s Capital Region have set a movement of kindness into motion by entering a poster contest to help express the themes of empathy and acceptance.
“In a world too often marked by conflict and indifference, these students are helping to remind us all how powerful it is to demonstrate empathy,” explains PEP President and Founder Dan Bobear. “We’re hoping to have a sold-out event and to have as many people as we can support Project Kind by donating whatever amount they can afford.”
Rare Disease Day at the Movies
Wednesday, February 28, 2018
Bow Tie Criterion Cinemas, 19 Railroad Place, Saratoga Springs
4:00 PM – 6:00 PM Poster contest winners gallery (theater lobby)
5:00 PM Awarding of prizes to contest winners (theater lobby)
6:00 PM Private screening of Wonder (ticket holders only)
Tickets are $20 each, with proceeds benefiting the Children’s Craniofacial Association to support children and families affected by facial differences. Tickets are limited and are being sold on a first come, first served basis at PEPProjectKind.com.
About Rare Disease Day
Every year on the last day of February, the international rare disease community celebrates Rare Disease Day by coming together in a show of solidarity. Patient organizations, lawmakers, medical professionals, researchers, patients, and families take part in commemorating the day in various ways around the world. Some of the goals are to help bring patients and families of rare disease out of the isolation that they often feel, to raise funds to support scientific research for treatments and a cure, and to advocate for policymakers to recognize rare diseases as a public health priority.
About the Children’s Craniofacial Association (CCA)
CCA is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA’s mission is to empower and give hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are,
not how they look.
About the Patient Experience Project (PEP)
PEP is a full-service, patient-centric communications agency serving the healthcare, pharmaceutical, and biotechnology industries. PEP has offices in Saratoga Springs, New York and Chicago, Illinois. PEP’s nationally recognized approach centers around the collaboration with the foremost disease experts—patients themselves—to co-create authentic programs and content for patients, caregivers, and healthcare professionals.