Page 29 - NYC Imagine Awards Journal

Innovation

Michael Hund, MBA, Chief Executive Officer Dan Rubins, Co-Founder & Executive Director
EB Research Partnership Hear Your Song
244 Madison Ave. Suite 104, New York, NY 10016 Manhattan, NY
(646) 844-0902 | www.ebresearch.org (646) 584-0198 | www.hearyoursong.org
Hear Your Song empowers children and teens with serious illnesses and complex health needs
EB Research Partnership (EBRP) is the largest global organization funding research, treatments, to make their voices heard through collaborative songwriting. Hear Your Song provides power
and cures for Epidermolysis Bullosa (EB), a group of devastating life-threatening skin disorders and choice—and a microphone—to young people with a wide range of diagnoses, both physical
that affect children from birth. Individuals with EB lack critical proteins that bind the skin's and mental health conditions, that so often deprive them of both power and choice in their
layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading day-to-day lives.
to severe pain, disfigurement, and internal and external wounds that may never heal. Today, Through trauma-informed, kid-driven songwriting sessions, youth participants write and
there is no cure for EB, but EBRP is dedicated to changing that. Since our inception, we have produce their own songs about anything they want—from loving pasta to living with epilepsy—
raised over $50M to fund 120+ research projects that focus on bringing life-saving therapies to and to participate however they choose in the process of turning their lyrics into fully-produced
the EB community. We have completely transformed the EB landscape from 2 to now more songs. All youth write their own lyrics and many record their own vocals, compose their own
than 40 clinicals trials (more than a 20X increase) and now, for the first time ever, we have an melodies, and produce their own beats and tracks. Others suggest ideas for musical style,
FDA approved EB treatment, VYJUVEK, with 3 additional therapies in the final phase before melody, instrumentation, and tempo, which our volunteer composers and musicians then use
approval, giving healing and hope to EB families. EBRP funded VYJUVEK via our innovative to create a recording of the song that captures, as precisely as possible, what the child imagined.
business model of venture philanthropy. When we make a grant to a research project, we
retain the added upside of generating an additional revenue stream if the therapy or product is Hear Your Song builds community through partnerships with children’s hospitals, summer
commercially successful, and use the ROI to fund additional EB research until a cure is found. camps, and diagnosis-specific organizations. Following the initial songwriting experience,
EBRP's leading model has been acknowledged by Harvard Business School, Yale University, Hear Your Song invites every youth songwriter to continue to engage with Hear Your Song’s
and the Milken Institute FasterCures. year-round programming, including Peer Songwriting and Music Production Groups and live
performances. Pivotally, Hear Your Song amplifies the songs that kids write to ensure that
youth songwriters’ voices are heard and celebrated.
Hear Your Song supports youth songwriters not because they need to be healed but because
they need to be heard.
Martha Neighbors, Executive Vice President Greis Torres, Communications Specialist
Snug Harbor Cultural Center & Botanical Garden VIP Community Services
1000 Richmond Terrace, Staten Island, NY 10301 770 East 176th Street, Bronx, NY 10460
(718) 425-3504 | www.snug-harbor.org (718) 583-5150 | www.vipservices.org
Snug Harbor Cultural Center & Botanical Garden is an unexpected oasis where the arts, history VIP Community Services offers comprehensive and integrated medical, behavioral health,
and nature converge to create a holistic community resource in Staten Island’s North Shore. housing, and wraparound services that are equitable and promote positive outcomes for the
Founded in 1976, we transformed a historic 83-acre, 19th-century charitable rest home for people served, their families, and the community.
“aged, decrepit and worn out sailors” into a vibrant hub of contemporary culture and community
connection, sustainability and discovery. Today, we offer dynamic programming in the arts, VIP was founded in 1974 on the belief that people can become self-sufficient and transform
horticulture, urban farming and composting for diverse cultures and all ages, and steward a their neighborhoods into safe, thriving communities. Our person-centered philosophy tailors
historic campus for New Yorkers, visitors and future generations. treatment to best serve each person’s needs through individualized services to address behavioral
health challenges, lack of housing, chronic illness, and/or mental illness. VIP also provides
Snug Harbor is the private non-profit organization that manages the entire 83-acre campus on primary care services to support optimal health and wellbeing, including annual check-ups,
behalf of the City of New York. Our grounds are open dawn to dusk, 365 days a year, free of vaccinations and testing.
charge. We are home to multiple ecosystems, historic architecture, museums, conservatories, VIP is an innovative organization that distinguishes itself through its comprehensive integration
small businesses and artist studios. Stewardship and conservation, artistic vibrancy and of social, behavioral, medical and housing services, all tailored to meet individual patient
discovery, community and inclusion are key values. Come, explore and discover the wonder needs and health objectives. The organization consistently evaluates patient satisfaction and
of Snug Harbor!
remains responsive to evolving community requirements, displaying a remarkable ability to
swiftly implement new services when needed.
With the 2023 NYC Imagine Award for Innovation, Snug Harbor will purchase three new
quadbikes and fully convert to sustainably powered garbage collection. As Staten Island’s pre- One recent initiative, being conducted in partnership with St. Barnabas, BronxCare Hospital
eminent culture park, we are dedicated to environmental conservation and sustainability. As a System, and Healthfirst Health Insurance, involves placing Community Health Workers and
landlord, we are responsible for safe operations. Our project will replace gas-powered vehicles Peers directly in hospital emergency rooms. Their mission is to engage with patients seeking
with human-powered quadbikes for this essential task, which is both greener and safer for all care for substance use and mental health disorders, assessing their existing connections to
of our site users: tenants, visitors, artists, students and program participants. And, it’s FUN! care and, if lacking, ensuring appropriate linkage to services before hospital discharge. The
overarching aim is to reduce avoidable hospitalization and readmissions, improve continuity of
care, and overcome barriers to accessing essential healthcare services.
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