Help Make Halloween Fun at Kennedy Krieger!
September-October 2025
Be a part of giving out smiles when patients trick-or-treat there.
You can organize a gathering of kids and/or adults to make Halloween-themed bead bracelets when they bring an item from our Amazon Wish List to donate. All the donated items will be placed at nursing stations on Halloween so patients can walk or roll to each station for a treat! (If they ask for a trick, the staff will likely have something fun up their sleeves.)
If you can’t organize an event and want to contribute, please order an item (or more) from the Wish List. It’ll come to our office and we’ll deliver it to Kennedy Krieger before Halloween. The collaborating KKI staff members will distribute them to the stations for trick-or-treating fun!
All contributions must be made for delivery by October 16, 2025. Please email us if you have any questions!
Join Eliana's Light in the Race for Every Child
October 18, 2025
It’s that time again for the annual Race for Every Child 5k walk/run event! We participate in this event every year to support Children’s National Hospital’s efforts to provide whole health care through integrative care services.
This will be our 13th year participating, and we’ve been a part of this race since the start! Our dedication to the power of whole health - supporting the physical, mental, and emotional well-being of children and their families - is unwavering. Families and providers alike have seen the transformative power of whole health-focused care, and we are proud to run (and walk) with others who share our convictions.
This year, our efforts will raise funding to expand integrative care services offered within the Cardiac Intensive Unit and the Heart and Kidney Unit, helping hundreds of families get the whole health care that they need.
Will you donate to or join our team?✨
• Join our team (registration is free!) → click here
• Donate to support our team’s efforts → click here
Make sure to select “Team Eliana’s Light” from the list of team options!
Together, we can make sure even more children and families receive the care and support they deserve. Thank you for walking, running, or giving alongside us!
Help Us Find More Families to Participate in Research
By December 2025
We are involved as a community partner in a few exciting research studies. We welcome your involvement right now in helping us find more Latino caregivers and parents of children who have received an organ transplant. The children must be receiving care in our region.
Here's a flyer on the study with the email address of the main researcher, Erika Ventura Castellon. Please share Erika's email address with anyone you may know who might qualify to participate and note they should mention Eliana's Light. Qualified participants can receive up to $50 in gift cards as expressions of appreciation. This study's findings will help improve care for this patient and caregiver population.
Bracelet-making - a tool for self-empowerment!
By January 2026
We’re making bracelets for patients at Children’s National Hospital! Why bracelets? Well, our wrists are one of the places on our bodies that we look at all the time. Because we can look at them easily, at any time, we wear watches, bracelets… and hospital wristbands. Let’s give the children something better to look at!
All ages welcome! Would your neighborhood, class, scout troop, office, or other community like to participate? Email us before the end of December to schedule this event for your group.
Let’s come together to make beautiful bead bracelets with positive messages!
A few examples of the sort of messages that we’re hoping to craft: “I am Strong!” “My Sister is Awesome!” “Family!” “Hope!” “I can do this!”
Join us to deliver empowerment and strength to patients and their families. Please email us to express your interest and share any questions you may have. We'd love to connect with you on this.
Outcomes of Book Drive for Hospitalized Children
You Brought the Joy of Reading to Hundreds!
This back-to-school season, we organized a book drive, bringing comfort, imagination, and joy to young patients and their families. And, we are overjoyed to say, through your kindness, it was an incredible success!
Our amazing community of people contributed a total of 321 books for hospitalized children at Children’s National Hospital!
At Eliana's light, we believe that books are essential, a part of our philosophy of "whole health." When we read, we open up a new world for ourselves, learning new things and expanding our imagination beyond any limits.
Thank you for being a part of our constellation of care - the difference that you've made in the lives of these families is impossible to measure.
Outcomes of “Breaking the Silos”: May 20, 2025 Virtual Event
Eliana’s Light was thrilled to support the 7Q Foundation and collaborate alongside the NOVA DD Group to collaboratively organize this first-ever convening of providers, advocates, and change makers who came together to build partnerships, share ideas, and create real impact.
Participants (e.g., therapists, educators, non-profit founders, etc. who support families that include children who have medical complexities):
✨ Connected across disciplines
🤝 Discussed how to barriers to collaboration
🌱 Focused on the whole child and whole family
🌎 Became part of something bigger than their organization/business
Please read the key take-aways that the initiator, Hafsa Salahuddin, founder of the 7Q Foundation wrote and email us if you’d like to become involved:
Author: Hafsa Salahuddin | The 7Q Foundation Date: May 20 2025
Abstract: The "All Providers' Convention: Breaking the Silos," hosted by the 7Q Foundation in collaboration with NOVA IDD and Eliana's Light on May 20, 2025, brought together cross-disciplinary professionals to address systemic fragmentation in care delivery for neurodiverse and medically complex populations. Drawing on personal narrative, professional expertise, and live collaborative sessions, the conference proposed a model for holistic, coordinated care driven by shared goals and family empowerment. This article synthesizes key insights, analyzes the barriers to integration, and offers evidence-based recommendations informed by literature on care coordination, trauma-informed practice, and systems thinking.
Introduction: Families raising children with complex needs often face fragmented services across medical, educational, and therapeutic sectors. These silos hinder effective care, burden families, and diminish outcomes. This paper explores a multi-stakeholder convening designed to challenge that reality and catalyze change. The research is grounded in conference proceedings and supported by peer-reviewed studies, policy frameworks, and real-world examples of integrated care.
The Problem of Fragmentation: Research shows that disconnected services increase caregiver burden, lead to duplication or gaps in care, and result in poor developmental and educational outcomes (Bromley et al., 2004; Kuo et al., 2012). Studies in pediatric care coordination reveal that families with multiple service providers often serve as the sole point of integration, leading to chronic stress and health disparities (Antonelli et al., 2009). Service fragmentation is not only inefficient but also inequitable, disproportionately impacting families of color, immigrant communities, and those with limited access to information or financial resources.
The Conference Model: Hosted virtually on May 20, 2025, the "Breaking the Silos" convention engaged professionals: BCBAs, therapists, social workers, educators, attorneys, and caregivers. The event included:
A keynote grounded in lived experience and parent advocacy
A cross-sector panel with real-world case studies
Breakout groups addressing implementation barriers and enablers
Real-time digital whiteboarding and chat participation for inclusive feedback
A closing plenary with co-created action steps and solution design
3.1 Defining Holistic Care: Conference participants defined holistic care as multidimensional, trauma-informed, culturally responsive, and family-centered. Holistic care addresses physical, emotional, educational, financial, and social needs. This definition echoes frameworks found in Whole Child education models (ASCD, 2007), medical home models in pediatrics (AAP, 2012), and trauma-informed care systems (SAMHSA, 2014). Participants noted that holistic care must go beyond compliance-driven models and shift toward community-grounded practices that reflect lived experiences.
3.2 Facilitators – All Providers’ Convention May 20, 2025 | Virtual Networking Event
Whitney Ortiz, Founder and President, Eliana’s Light (www.elianaslight.org)
Kristin Carleton, CEO & Chief Investment Strategist, All Needs Planning (www.allneedsplanning.com)
Carinne Mossa, Founder and Non-Attorney Advocate, It Takes a Village Special Needs Parent Coaching LLC (www.ittakesavillagenc.com)
Nicholas R. Thompson, Attorney, Pender & Coward (www.pendercoward.com/our-people/nicholas-r-thompson)
Malia Phelps Waller, Founder & Owner, Malia Phelps Waller LLC (www.maliaphelpswaller.com)
Taylor Bland, Founder & Owner, B-Empowered EFC (www.bempoweredefc.com)
Amanda Sharpe, Founding Executive, Roots To Blooms (www.roots2blooms.com)
Cortney Heykoop, Chartered Special Needs Consultant, Clover Leaf Wealth Strategies(www.cloverleafwealth.com)
Michelle Kotler , Special Education Advocate, (www.parentsplaybook.org)
Core Themes and Solutions From the discussions, five priority strategies emerged:
4.1 Collaborative Follow-Through Families emphasized the difference between passive referral and active, coordinated implementation. Literature supports that integrated care plans and team-based follow-up improve health and behavioral outcomes (Epstein et al., 2008). Participants noted the importance of cross-training, shared documentation, and real-time communication channels to prevent missed steps in execution.
4.2 Empowering Families Panelists and attendees urged a cultural shift from service delivery to co-creation. Research supports that family-professional partnerships result in higher satisfaction and developmental gains (Dunst & Trivette, 2009). Conference attendees advocated for parent training, advisory roles, and feedback mechanisms to ensure their voices shape program design and evaluation.
4.3 Shared Digital Infrastructure Lack of interoperable systems is a major barrier to collaboration. Participants discussed ethical, secure digital tools like Diverrx.com that would allow providers and families to coordinate care more effectively. According to Kuo et al. (2012), integrated electronic records and shared platforms increase efficiency and continuity, especially when anchored in family consent and privacy protection.
4.4 Curated Resource Pathways At diagnosis, families are often overwhelmed with information. Panelists recommended simplified, vetted roadmaps that prioritize next steps, relevant services, and funding sources. Studies suggest tailored information at key moments reduces decision paralysis and caregiver stress (Zwaanswijk et al., 2010). Participants suggested a family-facing care map prototype and multilingual support.
4.5 Professional Care Navigators The role of an informational consultant or care coordinator was widely endorsed. These positions help families navigate complex systems and improve access. Antonelli et al. (2009) identified care coordination as a cost-effective method to improve outcomes and reduce disparities. Participants emphasized lived-experience hiring, cross-agency funding models, and wraparound navigator training as success factors.
5. Discussion The conference revealed that real change depends on system redesign, cross-sector training, and policy alignment. Challenges remain—funding, data privacy, role clarity—but the appetite for reform is strong. Participants left with concrete tools and new alliances. Many proposed next steps included the creation of regional collaborative circles—ongoing working groups designed to promote relationship-building, knowledge exchange, and implementation of best practices. These circles would facilitate sustainable co-design across roles and organizations. Additional next steps included pilot projects with co-treatment models and parent-led evaluation teams to monitor impact.
6. Conclusion Breaking the silos is not a metaphor—it is a mandate. As providers, families, and systems reimagine care, events like this lay the groundwork for integrated solutions. The 7Q Foundation commits to convening, equipping, and innovating alongside those who dare to build better for our most vulnerable populations.
References:
Antonelli, R., McAllister, J. W., & Popp, J. (2009). Making Care Coordination a Critical Component of the Pediatric Health System.
ASCD (2007). The Learning Compact Redefined: A Call to Action.
AAP Council on Children with Disabilities. (2012). Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems.
Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders.
Dunst, C. J., & Trivette, C. M. (2009). Capacity-building family-systems intervention practices.
Epstein, R. M., Fiscella, K., Lesser, C. S., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care.
Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care.
SAMHSA (2014). SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach.
Zwaanswijk, M., et al. (2010). Parental information needs in pediatric care.