Therapeutic Play: Rare Disease Pediatrics

Project Sunshine Inc.

Approximately 15 million children in the U.S. are living with a rare disease. These children receive medical treatment either in the hospital or in an outpatient setting, often missing school and opportunities to play with their peers. They are at high risk to experience stress and isolation; many of their interactions are centered around their medical conditions, and it is especially difficult when they do not know another family dealing with their same condition. The mental health crisis among children has become a national emergency, and for those living with rare illnesses and chronic diseases, the situation is even more complicated. They are more than twice as likely than their healthy peers to be experiencing mental health challenges.

Kids learn through play, express themselves through play, and relax through play. For kids with medical challenges, play normalizes unfamiliar settings and helps to build resiliency. Receiving high-quality medical care along with the opportunity to play helps to create connections and establish a sense of normalcy which supports improvements in both their physical and mental health.

Project Sunshine’s three customizable play programs can aid in improving emotional wellness, increase adherence to treatments, and lead to better physical and mental health outcomes for children with rare diseases. Our core delivery channels include in-person programs (Here to Play), individual activity kits (Kits for Play), and our new virtual program (TelePlay). Please take a look at our video sharing the impact of TelePlay on a rare disease patient family in California.

Because of its virtual nature, Project Sunshine’s Teleplay program has the greatest potential to reach unlimited number children with rare diseases across the U.S., in hospitals and at home, no matter their age or ability. That is why we are seeking the Amgen Prize for our work to enhance the Teleplay platform, improving the play experience and dramatically increasing the number of children with rare diseases who can participate.  

Our solution is to expand Project Sunshine’s presence in the pediatric rare disease community by investing in a new technology platform for our TelePlay program. 

Project Sunshine currently works with 37 NORD (National Organization for Rare Disorders) centers of excellence to provide our Kits for Play and in-person Here to Play programs. We also have partnerships with four non-profit partners serving the rare disease pediatric community: Barth Syndrome Foundation, Children's Cardiomyopathy Foundation, National Neutropenia Network, and SADS Foundation for our TelePlay program. Through NORD and our non-profit partners together, we serve 15,500 children with rare diseases annually across all three programs (in-person, virtual, and kits). We are proud to serve so many rare disease patients, but with 15 million rare disease pediatric patients in the U.S. there is much more to do.

We believe that the path to scaling our programs to serve more children with rare diseases lies with our TelePlay program. At the onset of the pandemic, we acted within the first few weeks of the shutdown to create TelePlay, developing an online playroom and training volunteers to facilitate activities in which   pediatric patients can participate in games together. Hospital staff, patients, and families loved our new offering, and early assessments demonstrates its effectiveness, with over 80% of children experiencing a reduction in anxiety following a session.

Teleplay also allowed Project Sunshine to see its future in a much more expansive way.  With this new delivery platform, we would no longer be confined to working in-person at hospitals and, for the first time, would be able to consider a dramatic leap in the number of children served, especially in the rare disease community.

To do this we must invest in a new technology platform so that we can create an enhanced and scalable TelePlay experience that will engage more pediatric patients living with rare diseases. Our goal is to double the number of children with rare diseases that we serve to over 30,000 annually in the next three years, and then to continue significant growth year over year.

TelePlay 2.0 will provide pediatric families with a continuum of play and socialization from the hospital to the home. It will improve the virtual play experience for patients by making it easier to join a session and interact with volunteers and peers, and will be accessible on site through our partner hospitals or accessed at home. Indeed, this home component is very important given the increase of children receiving outpatient care and recovering at home instead of in the hospital.

Launching TelePlay 2.0 is a critical step in bringing play to more rare disease pediatric patients through NORD centers and rare disease non-profit partners that provide referrals to patients  We also see Teleplay 2.0 as an important way to collaborate with support group leaders, social workers and  physicians who are seeking creative methods to stay connected to their patients to track progress or conduct research. 

Our solution can potentially serve the 15 million children with rare diseases in the U.S., ages 0-18 as we enhance the technology in Teleplay 2.0 to serve a larger market.

Children with chronic conditions often experience increased stress and isolation, and many of their interactions are centered around their medical conditions. Experiencing trauma as a pediatric patient can have lasting negative psychological impacts. When children are receiving medical treatments and forego regular play, they miss out on a powerful coping mechanism and are at risk of heightened stress.

Receiving high-quality medical care along with the opportunity to play, create connections, and establish a sense of normalcy enables those affected by rare diseases to improve both their physical and mental health. Project Sunshine currently has programs in 48 of 50 states, including in 300 U.S. cities. With the enhancements and expansion to our TelePlay program, we will eventually be able to bring play everywhere in the country where there are rare disease pediatric patients. 

Since its inception in 2020, Teleplay has served over 11,000 pediatric patients; we estimate that at least 10% of these children were affected by rare diseases. Please note that we do not collect diagnosis information of our patients but can deduce their condition from which facility or organization they join TelePlay.

While TelePlay has been a success in its original version, the patient experience and technology must be enhanced to allow for its growth and maximum impact. We are looking forward to introducing Teleplay 2.0 in 2025 and are confident it will be an increasingly common way of reaching children and families with rare diseases in the years ahead.

We have chosen the growth phase because we plan to use TelePlay to double our current reach with rare disease patients from 15,550 to 30,000 in the next three years.

Teleplay is the only virtual play intervention in the health care space. Teleplay is also a ticket to health equity: through strategic expansion, we can ensure that every community has this resource to support the mental health of their children with rare diseases receiving medical care.  

Project Sunshine uses the voices of patients and families to design and improve our TelePlay program. We are currently partnering with the Kentucky Association of Health Plans and University of Kentucky on a research project to assess the impact of TelePlay on emotional health over a six-month period. Through this study, we are receiving direct feedback from patients on their TelePlay experience, which will allow us to make adaptations and enhancements.

We also use our research partnerships and direct patient feedback to continue to collect evidence to show how live, interactive play in a virtual setting supports children’s recovery from crisis and coping through chronic illness. In sharing this evidence and making our case to health care providers and national non-profit disease groups, we will demonstrate that play can bring all children to the table for care and can help to improve their healthcare experiences and outcomes. To this end, we recently entered partnerships with Crohn’s and Colitis Foundation, Juvenile Diabetes Research Foundation, and a transgender youth support group at NewYork-Presbyterian Hospital. By expanding these partnerships and testing new collaborations between play and medical support, we believe there will be ripple effects on the health outcomes of children, such as reducing no-show appointments and advancing children’s adherence to treatments.

We will also be democratizing our play therapy programs which for years relied on in-person support from trained volunteers in hospital settings. By expanding TelePlay, we can support hospitals with minimal or non-existing volunteer structures, as well as serve children receiving care at home or in non-hospital facilities.

We are applying to the Amgen Prize because fundraising to improve our TelePlay platform is one of our top priorities.  We also believe that the Amgen Prize will raise our profile in the field and with the public, and allow for more networking opportunities with leaders in the rare disease space. Building our brand and making these introductions is vital to developing new partnerships with hospitals and non-profit organizations as well as having the support of the public. The Amgen Prize will also provide us with credibility and a launching pad to approach other corporations and foundations that support the healthcare experience of rare disease pediatric patients, enabling us to talk about TelePlay and spread the word about ways to support our work.

Project Sunshine’s staff includes child life specialists and volunteer management experts who help to deliver outstanding programs to pediatric patients and those living with rare diseases. These individuals firmly believe in the importance of play for children facing medical challenges and many have developed this passion through their own lived experiences.

We also have a corps of 18,000 volunteers who serve as a vital extension of our workforce. Project Sunshine’s programs are facilitated through the leadership of these local community members. Among these thousands of volunteers are 180 locally-based volunteer chapter leaders who are responsible for recruiting and training volunteers and implementing volunteer opportunities in their area such as TelePlay. These leaders work directly with rare disease partners, NORD facilities, and other facilities to plan programming that meets the needs of patients and families. Because chapter leaders reside close to medical partners and often have their own experiences facing medical challenges, they are uniquely positioned to support this community of children and families.

In addition, child life specialists and social workers across our hospital partners and non-profit relationships are critical leaders and advocates for our play programs and volunteer opportunities. They work in the medical facilities where patients are receiving care or specifically with a rare disease patient group and are familiar with the unique physical and emotional challenges facing local kids and families. These professionals communicate with Project Sunshine to request programs based on their group’s specific needs and interests.

Lastly, we represent rare disease patients and their families’ perspectives in our organization’s leadership groups. Former rare disease patients and their family members sit on our board committees, and have created a formal network of pediatric patients and families including rare disease families, called the Sunshine Network, who wish to stay connected to Project Sunshine’s work and each other. 

Impact goals through 2026-27 are as follows:

• Increase partnerships with NORD centers and rare disease non-profits across all three programs (in-person, virtual, kits) to reach more rare disease pediatric patients
• Serve over 30,000 children with rare diseases annually, doubling the current number
• Launch TelePlay 2.0 to engage more children with rare diseases across the country at home or in the hospital

Below is a breakdown of goals to be reached each year:

2024 – 2025

• Raise necessary funds for Teleplay 2.0 and begin technology build 
• Develop plan for expanded medical and non-profits partnerships to reach more rare disease pediatric patients
• Target specific NORD centers and rare disease non-profits to engage for TelePlay
• Begin increasing volunteer base to serve larger number of rare disease patients

2025 – 2026

• Complete technology build for TelePlay 2.0
• Implement plan for expanded medical and non-profit partnerships, onboard new rare disease partners, and introduce TelePlay 2.0 to existing rare disease partners

2026 - 2027

• Continue activities noted above 
• Reach 30,000 children annually with rare diseases 

Project Sunshine is committed to continuous evaluation of the efficacy of our programs, ensuring we are contributing to positive health outcomes of rare disease patients, and helping rare disease patients build supportive communities. We use our HIPPA-complaint evaluation platform to track participation and employ qualitative measures such as surveys and interviews to obtain program feedback. For this project, we will track specific success in our work with the rare disease community: increasing offerings, adding NORD centers and partners, introducing more engaging/accessible TelePlay programs, and receiving feedback from pediatric families to ensure we have met our goals of reducing anxiety, providing relaxation, and offering much needed support to the pediatric rare disease community. 

During four years of years facilitating TelePlay programs, we have received positive and appreciative feedback from patients, physicians, and community leaders about the power of TelePlay. Dr. Steven Kernie, Chief Medical Officer, Women’s and Children’s Services at NewYork-Presbyterian, hailed this program as “a vital support to our most vulnerable patients during the pandemic.” We believe healing and community can be built through TelePlay, especially for the rare disease community.

This video shares the impact of TelePlay on a child with a rare disease in California. The child and her mom speak about the joy and community that TelePlay brings to them. We know that the expansion of TelePlay can bring feelings of relaxation, stress reduction, and connection to more children facing similar situations, and have made it a priority to share this program with a larger population.

Our solution team has six full-time staff members, including program management, volunteer engagement, and fundraising professionals.

We have been working on this solution since the development of TelePlay in 2020 and more intensely with the launch of Project Sunshine’s newest strategic plan in 2022. The Amgen Prize will provide us with vital resources to greatly expand our focus on the pediatric rare disease population.

DEI is part of the Project Sunshine philosophy to bring play to ALL children who are acutely and chronically ill. We are especially focused on reaching kids and families in underserved communities who have less access to quality care than their peers in better resourced communities. Highlights of our efforts include: 

• Fast-tracking collaborations with medical partners that reach underserved groups. When safety-net and community hospitals with scarce resources are interested in bringing play to their pediatric patients, we prioritize and fast-track the partnership. We are also committed to learning more about how to better reach and serve this important community of partners, patients, and families through research being conducted with university partners. 
• Sustaining and growing a diverse volunteer base. Our community and college volunteers represent a wide variety of geographies, ages, ethnicities, and races. Of the 52% of volunteers who share their race with Project Sunshine, 40% are BIPOC. We are committed to ensuring that our volunteers best reflect the patients and families we serve. We are also integrating DEI training, led by a disability expert, into our mandatory volunteer training as new volunteers are onboarded. 
• Enhancing our play therapy programs so they are more adaptable for patients with physical and developmental abilities. We estimate that 77% of patients we serve have a disability. We will continue to enhance the options available to these patients to deliver play that fits the needs of all kids. 
• Democratizing local volunteer opportunities. Project Sunshine matches local volunteers with nearby hospitals of all resource levels. Well-resourced hospitals typically enjoy a strong volunteer base while under-resourced hospitals do not. Our democratic approach helps hospitals in low-income communities gain access to trained and passionate volunteers and foster new relationships in communities. 
• Facilitating opportunities for our staff to learn and practice DEI values, and teach staff how they can integrate diversity, equity, and inclusion objectives into their specific department’s work. This includes internal staff trainings, an ongoing DEI book club, paid internship program that attracts a diverse set of college students and setting specific goals within each department’s annual work plan. 

Over the next 3-5 years, our DEI goals are to:   

• Continue to diversify our Board. As new Board members are recruited, candidates are prioritized if they are from an underrepresented group, including individuals who are BIPOC, have one or more disabilities, or are LGBTQ+.  
• Continue to prioritize diverse candidates when recruiting and hiring. We have enhanced how we recruit new staff members, searching nationally and through the broadest possible avenues to reach the best possible candidates. We have also prioritized diverse candidates whenever possible in final hiring decisions. In the coming years, we hope to build upon this progress.  
• Launch an internal DEI committee that will advise on staff DEI trainings, seek and collect staff feedback about DEI opportunities, and oversee other initiatives to build a more diverse and inclusive culture. 

Project Sunshine is the leading volunteer-based organization delivering free, quality play programs to children with medical needs and their families. We partner with over 500 hospitals and medical centers across the United States and three international locations to connect them with over 18,000 trained volunteers who deliver our three essential play activities to pediatric patients and their families. We work with child life specialists and other healthcare staff to create a space in the hospital environment for kids to socialize with each other and to participate in fun activities that are both recreational and educational. Opportunities for play and mental stimulation distract patients from their physical and emotional challenges, give caregivers a break to tend to their own needs and support hospital staff through the provision of additional services and resources. Below are details on our three signature play programs: 

Here To Play 

• Volunteers play and interact with children, families, and medical facility staff at a local hospital. 
• Project Sunshine provides volunteers and medical staff with themed arts and crafts materials that are shipped directly to the medical facility. 
• Sessions can be held in a hospital play room for larger group activities or at bedside for one-to-one patient-volunteer interaction. 
• Each session lasts about 2 hours. 

Kits for Play 

• Volunteers gather as a group to assemble our activity kits that will be sent directly to pediatric patients. 
• Activity kits contain arts and crafts materials for children to use and play with during their hospital stay. 
• Project Sunshine sends all the materials to pack activity kits to the chapter. 
• In one hour, volunteers can pack 100 kits for 100 children. 

TelePlay 

• Volunteers facilitate a 1-2 hour virtual play session on a secure and HIPAA-compliant Zoom call with a small group of children. 
• Project Sunshine provides a game library for volunteers to pick activities from a PowerPoint template, and a script to help facilitate the session. 

While our target population is children who are sick or have chronic conditions, we are not a direct health care provider. We supplement the work of our medical partners and non-profits by delivering uplifting play experiences in hospitals and at home experiences which are vital to the overall well-being and better health outcomes of the patients. 

In 2022, we began fundraising to expand our programs to more pediatric patients and have raised $2.7M  towards a $10M goal. The TelePlay program and expansion to more rare disease patients is one piece of this broader strategic plan. Top donations to our strategic plan fundraising campaign include:

• $1,000,000 – The Wilpon Family Foundation
• $500,000 – Mike & Carolyn Goldman
• $250,000 – Vernon Evenson
• $250,000 – Caryn & Howard Unger 
• $250,000 – Joe Weilgus 
• $250,000 – Natan & Jessica Bibliowicz 
• $150,000 – Gireesh Sonnad 
• $50,000 – Musk Foundation 

• $15,000 – Dr. Jerry Loughlin  

We currently have more than $2M in proposals outstanding and will be inviting all 2,500+ donors in our community to support this campaign. In addition, we will also be identifying and inviting new donors, institutional partners, and corporate partners that align with Project Sunshine’s mission to contribute as well.  If a budget gap arises after dedicating significant resources to raising philanthropic support, we will consider adjusting our program and goal timeline to meet our financial position.