Hear Your Song

Kids living with life-threatening and chronic illnesses need the chance to show the world — and sometimes to hear for themselves, too — they are more than their diagnoses. Youth living with serious illnesses are so often denied power and choice throughout their medical journeys. They are told what procedures and treatments they must undergo and how long they must stay away from friends and family while they are in recovery or immunocompromised. Their stories are seldom heard, their perspectives are seldom sought, and the outside world so often sees only their diagnoses instead of the full, rich, creative human beings that they are.

Since children with chronic illnesses do not have the same opportunities as their peers to be heard and to tell their stories, they are allowed to remain on the fringe of our consciousness; they speak only, as the aesthetic educator Maxine Greene describes those members of society who are overlooked, with “submerged voices.”

19.2% of U. S. kids have a chronic health condition resulting in a special health care need. Youth living with a chronic condition affecting their physical health are 60% more likely than their peers to be diagnosed with a mental health disorder by age 15. According to the National Organization for Rare Diseases, over 15 million children in the Americans are curerntly living with a rare disease. The COVID-19 pandemic has created an ongoing urgent need for youth with both physical and mental health diagnoses, the most isolated and at-risk youth populations, to find connection and community.

Hear Your Song provides power and choice — and a microphone — to young people with serious illnesses who are so often deprived of both power and choice in living their day-to-day life and in managing their health care journeys. Hear Your Song gives kids who are often cast to the margins the chance to define themselves beyond their diagnoses, embraced and validated by a community that responds with care and creativity to help each youth songwriter to write about anything they want, from loving pasta to living with epilepsy.

We think of Hear Your Song not merely as a mission but as a movement, one that centers and celebrates the humanity of every child and teen experiencing a serious illness, whether that affects their physical or mental health. In the wake of the pandemic, we recognize that the youth mental health crisis requires kids and teens to have creative outlets to express themselves and to share the parts of their lives, identities, and imaginations that are most meaningful to them.

As part of this movement, we most significantly recognize, too, that kids of color, especially those with traditionally underdiagnosed and undertreated conditions like sickle cell anemia and HIV, are especially in need of platforms to tell their stories. We are committed to partnering with organizations that serve youth with chronic illnesses that disproportionately affect Black Americans, recognizing that the trauma of illness is often compounded by the racial trauma experienced in the healthcare system. It is essential that programs that value the full story of the full human, and which take into account the complex traumas that kids experience, are part of the pediatric experience for every child and teenager.

Our mission has three strands: We Create, We Mentor, and We Amplify.

We Create: In live, collaborative songwriting sessions, Hear Your Song volunteers work with kids ages 6-18 to guide them through the process of writing their own song lyrics. Using the kid songwriter’s ideas for musical style, melody, instrumentation, and tempo, volunteer composers and musicians then set those words to music and record the song to be heard, celebrated, and shared. In addition to writing lyrics and coming up with musical ideas, youth songwriters frequently compose their own melodies, record their own vocals (and sometimes instrumentals), and even produce their own tracks. Songwriting sessions are led by a wide-ranging community of volunteers, including many professional musicians and the current members and alumni of our undergraduate campus-based chapters.

We Mentor: Hear Your Song trains and mentors undergraduate leaders who volunteer directly with children experiencing serious illness through our campus-based chapters. In order to best meet the needs of every kid as well as the volunteers who serve them, we are committed to providing all volunteers who lead songwriting sessions with trauma-informed care training.

We Amplify: Hear Your Song strives to shift public perceptions of kids experiencing serious illnesses by building a digital community within which children’s own words and musical ideas can demonstrate the fullness of their identity and the boundlessness of their creativity. We share lyric videos of each completed song, clips of kids talking about their songwriting experience, and messages from volunteer collaborators celebrating each child’s musical vision. Through our “Cheer Your Song” events, kid songwriters can speak live about their songs with their volunteer collaborators.

Hear Your Song serves youth ages 6-18 living with serious illnesses and complex health needs, including physical and mental health diagnoses. We are also currently piloting programs for neurodivergent youth. Our partnering organizations in 2022 include children's hospitals, nonprofits serving specific diagnosis populations, and camp programs around the world for youth with rare diseases including:

• ASD Nest Support Project at NYU Steinhardt
• American Partnership for Eosinophilic Disorders
• Barretstown Camp (Ireland)
• The ELM Project (Camp AmeriKids)
• Double H Ranch Camp
• Immune Deficiency Foundation
• Montefiore Medical Center
• Newton-Wellesley Hospital
• Sickle Cell Society UK
• Transplant Families
• Weill Cornell Medicine
• Yale New Haven Hospital

Since the start of the pandemic, we have supported over 250 kids in 27 states and 6 countries in writing their own songs about anything they want, from loving pasta to living with epilepsy.

Hear Your Song shakes up the stories about who children living with
serious illnesses are and can be by letting kids take control of the
narrative and share whatever part of their lives or imaginations they
want to lift into music. Hear Your Song's kid-driven process
provides power and choice every step of the way. Our youth participants
get to hear — from the volunteers, from the audiences cheering them on,
and from one another through our Peer Songwriting Groups and other
opportunities for kids to connect — that their voices matter.

Our leadership team centers the voices and needs of each diagnosis community we serve throughout each partnership with our collaborating organizations. It's essential to us that we have leadership and community members whose voices are amplified throughout our programming who have lived experience shared with the kids we serve: 2/3 of our year-round staff live with rare, autoimmune conditions and many of our volunteer musicians and songwriting session facilitators also live with serious chronic medical conditions. Through the construction of a Medical Advisory Council, Family Community Council, and Youth Advisory Council, we continually strive to uplift the voices of all members of the communities we serve.

Partnerships fuel Hear Your Song's mission: we work closely with children's hospitals (including Montefiore Medical Center, Yale New Haven Children's Hospital, and Newton-Wellesley Hospital), diagnosis-specific advocacy nonprofits (American Partnership for Eosinophilic Disorders, Transplant Families, MitoAction, Crohn's and Colitis Foundation, Immune Deficiency Foundation, Sickle Cell Society), and specialized camps (SeriousFun Network camps, Camp AmeriKids) and schools (NYU Steinhardt's ASD Nest Support Program) to reach new youth participants and to expand our shared community working collaboratively to empower the youth we serve. We intentionally design each partnership to meet the needs of each partner organization, recognizing their expertise in how best to support the local communities and diagnosis communities that they serve. In some cases, our partners refer families directly to Hear Your Song; in most cases, we develop programming collaboratively and work with staff (often health care providers or members of the community) who have deep relationships with families and youth already to implement our songwriting sessions.

For example, at Montefiore, we have built a series of programs since early 2021, in tandem with trauma specialist Dr. Jenny Seham, within her Arts and Integrative Medicine (AIM) program, serving youth receiving outpatient psychiatric treatment: Dr. Seham selects the youth, supports the training of our volunteers, and oversees and collaborates on all stages of our work with youth. We seek partners who share our vision of letting kids shape the way their own stories are told and understood and who understand the impact of thearts in supporting youth expression. In every partnership, we learn from our colleagues and from the families in each community how best we can adapt our songwriting session model to address the medical,
psychological, and learning experiences of the youth whose voices we
hope to amplify.

Our Board of Directors also includes medical providers who work in the hospitals we serve, parents of kids that we have supported, and individuals who have lived with serious illnesses themselves.

Central to our expansion as an organization is the growth of our team: we need additional programs staff to nurture relationships with partner organizations, mentor and support our chapter communities, oversee the individualized song production process, and facilitate the amplification of kids' songs to wider audiences. We are proud to have developed a model of programming that empowers large numbers of volunteers: we recognize that our programs' successful implementation and our capacity to reach more communities of families relies upon building a dedicated, highly-skilled, and sensitive programs team.

Our program staff hires have predominantly come from our volunteer community because our most active volunteer musicians and composers tend to have a deep understanding of our mission and passion for furthering our work. One of the principal projects of our Music Director at the moment is to increase the diversity of our volunteer community — this encompasses both a focus on racial diversity and a focus on active inclusion of artists living with chronic illnesses, a history of childhood illness, or mental health conditions shared with the children and teens we serve. Through targeted outreach in expanding our volunteer community, we will ensure that our volunteers continue to reflect the populations that we serve, and that, as we continue to grow our staff from within our volunteer community, our team will do the same. In outreach to volunteer communities at campus-based chapters, too, we are also focused on ensuring that we have diverse leadership — we are especially eager to be able to meet the funding needs (in terms of recording equipment, travel to hospitals, etc.) of chapters based on campuses with fewer resources available for music production and student activities.

Fundamental to the professional development of our staff and volunteers is Hear Your Song's commitment to trauma-informed care. In summer and fall 2021, Hear Your Song leadership (including staff, board members, volunteers, and leaders of our undergraduate chapters) collaborated with a trauma-informed care consultant to generate an Action Plan for integrating a trauma lens throughout our programming, training, and organization. All Hear Your Song volunteers who work directly with youth now complete a trauma-informed care training with our consultant and engage in reflective practice with staff around their implementation of what they learn within sessions. Hear Your Song will also be hiring additional training consultants next school year to lead sessions for volunteers centered on health equity and identity in the context of our songwriting sessions.

With increased funding, we will prioritize additional program hires, including a full-time Music Director and Project Amplify Coordinator (focusing on sharing kids' songs with a wider audience). We also hope to hire a part-time Development Associate in the coming year. As we expand our programs, the support of the Horizon Prize will allow us to continue to grow our partnerships around the world, funding the development of resources, trainings, and materials in other languages.

We are applying for this Challenge because of our impact on teenagers like Alex, an 18-year-old with a mitochondrial disorder whose experience writing a song about using music to cope with chronic illness led her to become a dedicated Hear Your Song volunteer as a college freshman, facilitating songwriting sessions with youth at a variety of partnerships. We are applying because of our impact on kids like Charlotte and Elliot, who met virtually through a songwriting session with the Crohn's and Colitis Foundation and have become best friends despite living half a continent away from each other: they've now composed a song collaboratively (on which they sing and play piano and flute) about how they connected and what Hear Your Song has meant to their friendship. We are applying because of our impact on kids like Jazlyn, who lost the ability to pursue her passions for dancing and singing because of her illness but who found new expression through songwriting, and like Zippy, whose love of musical theater inspired him to write an 8-minute musical about a zebra, the symbol of rare disease, which was ultimately produced as a video starring members of the original Broadway cast of The Lion King. Funding from the Horizon Prize will empower us to extend this kind of impact to hundreds more children and teens throughout the country, letting each youth songwriter become the driver of a creative process that is entirely theirs.

We believe that what makes Hear Your Song most innovative is our commitment to following each youth participant's imagination and creativity wherever it leads. We are innovative because we recognize every child's capacity for innovation. Flexibility is at the heart of all of our programming: in designing each partnership to serve the organization and the diagnosis community we're serving, in facilitating each individual songwriting session at the pace and with the focus and activities that best meet each child's needs, and in the song production process where we pursue each young songwriter's personal vision. This flexibility and openness respond to the fact that every kid is unique: whether we're supporting the twelve-year-old who writes a heavy metal song about ninjas for harpsichord and ukelele or the nine-year-old who wants to write her song for piano and violin in Russian or the seventeen-year-old with his own recording studio at home, we make it happen. Our expansive volunteer community of musicians and composers, ranging from high school students to pros, allows us to realize each kid's musical imaginings, to the fullest extent possible.

And while we believe deeply in the specific transformative power of music, we know that so many other forms of artistic expression can empower youth in similar ways. We aim for Hear Your Song's kid-driven model to inspire other leaders to build programs that similarly engage kids with rare diseases and communities that care for them collaboratively through the visual arts, dance, poetry, theater, and beyond — all while centering the voices and vision of every youth participant.

Hear Your Song strives to be a change agent, providing youth living with serious illnesses with a prominent platform to transform listeners' understanding of the full humanity and creative capacity of kids with chronic and rare medical conditions.

Partnership Expansion: Over the next year, Hear Your Song will double our current 15 organizational partners to maintain partnerships with at least 30 children's hospitals, nonprofit organizations, camp, and school programs that serve kids with serious health needs across the country. We will focus our partnerships on diagnosis communities that are often underserved, especially the sickle cell anemia community. Within five years, we aim to expand to partnerships that serve youth in all 50 states in the United States as well as in at least 12 countries worldwide, empowering youth to write songs in whatever language they choose.

Chapter Expansion: Over the next years, Hear Your Song will grow our undergraduate campus-based chapters to reach 15 schools with student leaders who will facilitate songwriting sessions with local children's hospitals and produce each child's song from the chapter's partnership or from national partnerships. (We currently have undergraduate chapters at Yale University, Wellesley College, Dartmouth College, Smith College, CUNY Hunter College, and Arizona State University.) Within five years, we aim to have campus-based chapters at 50 schools.

Increased Amplification: Through our Project Amplify, Hear Your Song will reach a vast audience who will comprise a community of celebration and connection in response to kids' songs and stories. Within one year, Hear Your Song will launch a podcast featuring kids sharing their songs and talking about their passions in long-form interviews; increase live performances featuring kids, Hear Your Song musicians, and guest artists; expand a program to encourage written and video feedback for youth songwriters from listeners; and extend our virtual "Cheer Your Song" songwriter showcases. Within five years, Hear Your Song aims to have over a million followers on our digital platforms listening to, and celebrating, the songs that kids have written.

Our clearest measure of success is when kids, families, and partner organizations seek to extend and expand their relationship with Hear Your Song. We measure the percentage of partner organizations that renew their collaborations with Hear Your Song, along with the percentage of kids and families that engage with Hear Your Song beyond the initial songwriting session. Since every partnership is structured to best support the needs of the specific diagnosis community, we develop feedback mechanisms alongside our collaborating organizations that allow us to qualitatively and quantitatively assess the success of our programs. We also have similar evaluation from our campus-based chapter volunteers to measure the effectiveness of our mentoring programs and to inform how we develop that aspect of our programming moving forward. For our Project Amplify, we also measure and analyze the engagement of our digital audiences with the songs that Hear Your Song's participants create.

By collecting data on volunteer engagement (both quantitative — as in number/categories of sessions and kids served by each volunteer and qualitative — the volunteer experience in each session), we are able to develop our trainings and opportunities for volunteer mentorship around the needs of our current volunteers while ensuring that volunteers are participating in songwriting sessions with frequency and are working with kids with a variety of needs and backgrounds to strengthen each volunteer's skills and flexibility. By collecting data from families (primarily through qualitative feedback and by measuring kids' and families' continues engagement with our programming), we are able to assess the models for our songwriting sessions that most consistently lead to long-term family engagement. For example, in one iteration of a virtual camp partnership, all youth attending camp that day participated in our programming rather than choosing a songwriting activity: after measuring the response and engagement from families when that particular group of campers received their finished produced song — and comparing those metrics from those in other partnerships — we were able to communicate to partners, backed up by our data, the importance of allowing kids to opt in to our programming in order to facilitate higher engagement, both from kids and families. Likewise, our data collected from and across partner organizations measuring the youth and family feedback they have received and partner organizations' interest in continuing our collaboration allows us to refine and develop partnerships to best suit the needs of each environment and diagnosis community.

The root causes of the problems Hear Your Song seeks to address include:

• A health care system that decenters and often silences the voices of youth living with rare and chronic medical conditions
• Systemic inequities (especially those fueled by racism) that further disempower youth with serious illnesses
• A global pandemic that has further isolated youth with medical conditions and exacerbated a youth mental health crisis

As a result, youth living with serious illnesses are in dire need of:

• Power and choice about their own lives and the ways in which they are defined
• A community, of both peers and mentors, that celebrates and uplifts their voices
• A platform for their stories to be heard
• An audience to hear their voices and to recognize their humanity

Hear Your Song delivers the following activities to youth with serious illnesses:

• Songwriting sessions, provided through a trauma-informed lens, aimed at giving youth power and control over how they are defined (including peer songwriting groups)
• Access to a community of musical volunteers dedicated to bringing each child's vision to life exactly as they imagine it
• Engagement through social media and live performance platforms with a wide audience hearing each child's story as they intend for it to be received

Hear Your Song's activities result in the following outputs:

• Songs, produced following the child's precise directions, honoring the child's precise lyrics, and often performed by the kid songwriters themselves
• Distribution and promotion of the songs to an audience that will celebrate them and provide feedback and support
• Long-term connection to a wide community of peers and mentors

Over time, Hear Your Song's participants experience the following outcomes:

• An increased sense of self-empowerment through the creation of their own song, telling their own stories on their own terms
• A increased sense of belonging — to a community of other kids with rare medical conditions who understand their experiences and to a community of musicians who view them as fellow artists and take their words and ideas seriously
• An increased knowledge that their voices matter, as evidenced by the response of an audience hearing their songs and celebrating their storytelling

To hear more about the impact of Hear Your Song's work and the effective outcomes, please watch this news story and this one!

Hear Your Song harnesses existing technology to bring together communities of youth living with serious illnesses and complex health needs, bridging within and between diagnosis communities, and communities of volunteer musicians and songwriting session facilitators seeking to amplify the voices of the youth we serve. When our young participants access programming through our HIPAA-compliant Zoom platform, we also connect them to learning opportunities through music production software like SoundTrap and Logic Pro as well as various video production software tools. These technologies have allowed a huge variety of collaborations — kids recording their own songs with composers halfway around the world; youth participants mixing and mastering their own tracks live — that would never have been possible without them.

These virtual partnerships have also, in addition to enabling a rapid expansion to serve kids in 27 states that would not have otherwise been possible, illuminated the ways in which we can best connect with families and empower volunteers. By having direct access to families through virtual video platforms, we’ve been able to offer kids extended and multiple sessions (some kids have written three songs with us!), opportunities for peer songwriting groups from across partnerships, and community-wide celebrations.

Our virtual sessions have also allowed us to train, support, and coach our undergraduate volunteers in more direct and personal partnership than in-person hospital volunteering by each local volunteer community would allow. We’ve seen the impact of volunteers leading sessions alongside our most experienced volunteers and being able to debrief and discuss each session in depth. As we continue to expand, we want to ensure that all volunteers feel connected to, and supported by, our whole network of volunteers.

Community is central to Hear Your Song's work — a community consisting of kids, families, partner organizations, volunteers, and audiences around the world — and that is fueled by our shared digital spaces.

We hope to soon launch a Hear Your Song app to allow our community members to easily access, and communicate about, all Hear Your Song content: songs, interviews, upcoming events, etc.

We are committed to prioritizing partnerships with organizations that

serve youth with chronic illnesses, including mental health diagnoses,
that disproportionately affect Black Americans. It is essential that
programs that value the full story of the full human, and which make
space for joy and celebration while taking into account the complex
traumas that kids experience, are part of the pediatric experience for
every child and teenager. We recognize the trauma of illness is often
compounded by the racial trauma experienced in the healthcare system. We
strive to create platforms for kids of color, especially those with
traditionally underdiagnosed and undertreated conditions like sickle
cell anemia and HIV, to tell their stories.

Our programs  are deeply rooted in trauma-informed practices and we have worked closely with a specialist to develop trauma-informed care training that all volunteers who work directly with kids complete regularly. Central
to this training is not only an understanding of the ways that the kids
we support may experience racialized trauma on their medical journeys
but also of the faulty assumptions about trauma and race that volunteers
may bring into their interactions with youth. Hear Your Song is built
on a foundation of radical listening and that requires all volunteers
and leaders of the organizations to be in conversation with their own
biases as well. We also recognize that opportunities to foster artistic
collaborations between youth and artists with shared cultural experience
are often powerful tools in our music-making.

In working with our organizational partners, we strive to build collaborations in which both organizations are held accountable for equitable access in
recruitment and ongoing support for youth participants of color in our
programming. We are committed to continuing to build a racially
inclusive and diverse organization in our volunteer recruitment and
hiring process and at all levels of leadership.

Hear Your Song is a 501(c)(3) nonprofit organization. Hear Your Song delivers our songwriting session programming (described above) free of charge to youth with serious illnesses. We identify these youth and families through partner organizations (children's hospitals, diagnosis-specific nonprofit advocacy organizations, camp programs, and schools) and through word of mouth. We believe strongly in keeping our sessions free of charge for the communities we serve because we want to ensure that all kids and families are able to access our programs and because every child's songwriting process is different: while we encourage and ask partner organizations to donate to support our programming, our individualized programming model means that the scope of a specific child's work with us will vary with complete dependence on their own interests and creativity.

We generate revenue entirely through donations (including those typically received from our partner organizations in proportion to the number of kids and expansiveness of collaboration), grants, and corporate sponsorships. 

Hear Your Song raises revenue through individual donations, donations from partner organizations, private foundations, and corporate sponsorships. Many of our individual donations come through peer-to-peer fundraising initiated by our volunteers, especially those at our campus-based undergraduate chapters. We also hosted our first in-person benefit concert in May, a livestreamed performance featuring a number of Broadway actors singing songs written by Hear Your Song kids alongside many of the youth songwriters themselves.

We are also in the process of developing channels for earned revenue. This will include:

●  Limited, paid songwriting sessions offered to individuals outside of the population we serve to allow us to continue to offer sessions free of charge to the communities we serve. This would include kids’ birthday parties, for example, as a way for families to engage in a fun activity that would support our mission.

●  Choral arrangements of Hear Your Song’s songs that school choirs and community youth choirs can perform, with music and performance fees supporting Hear Your Song. These performances would also serve Hear Your Song’s mission by amplifying the songs to new communities. Songs would be accompanied by a curriculum connected to our mission as well, allowing kids to deepen their understanding of the creative capacities of their peers with serious illnesses and strengthen their own storytelling craft through songwriting.

Hear Your Song has had significant success since our incorporation in October 2020 in receiving grants, and we look forward to continuing to build sustainable relationships with grant funders as well as with additional corporate sponsors. We will also continue to expand our major donors programs among our individual giving community.

In the past year, Hear Your Song has received grants from

• The Kenworthy-Swift Foundation: $27,500
• The Beacon Group: $16,000
• The Greater Sum: $9,000
• The Colburn-Keenan Foundation: $7,450
• The Zegar Family Foundation: $5,000
• GEICO Philanthropic Foundation: $5,000
• The Theresa Foundation: $5,000
• Nora Roberts Foundation: $3,000
• Whole Foods Community Giving: $2,892
• Les Paul Foundation: $2,750
• McGinnity Family Foundation: $2,500
• Laura B. Vogler Foundation: $1,500
• ONEHOPE Foundation: $1,000

We have also received over $50,000 in donations from individuals since September 1st, 2021, the start of our current fiscal year.