Cleft Stories: How Community and Advocacy Transform Lives Beyond Treatment
September 22, 2025When Melinda Dumas first brought her two-week-old son to Dr. Judah Garfinkle, she was beginning a journey that would span years of specialized care. Born with a cleft lip and palate, her son needed the kind of comprehensive, long-term treatment that requires not just medical expertise, but genuine partnership between families and their healthcare team.
Today, eight years later, her son wears braces and continues to thrive under Dr. Garfinkle’s care. As Melinda reflects on their experience, she notes, “He is kind, caring and very knowledgeable. The clinic has an upbeat vibe and every staff member seems to love their job.”
This transformation from those early uncertain days to confident, ongoing care isn’t just about medical treatment. It’s about the power of community, the importance of advocacy, and the strength that comes from shared stories. At Garfinkle Orthodontics, we’ve witnessed firsthand how connection and support can be just as healing as any procedure.
When families share their experiences, they create a ripple effect of support that extends far beyond their own situation. A simple story about how to help a toddler feel comfortable during dental visits can transform another family’s experience. A teenager’s account of navigating middle school with braces and speech therapy can provide invaluable guidance to younger children approaching those same challenges.
The Power of Shared Stories
Every family’s cleft journey is unique, yet the emotions and challenges often feel remarkably similar. The initial shock of diagnosis, the worry about surgeries, the concerns about speech development, and the questions about social acceptance create a common thread that connects families across different backgrounds and circumstances. Why Stories Matter:- They normalize the experience and reduce isolation
- They provide practical insights from real families
- They offer hope during challenging moments
- They help families prepare for what lies ahead
- They celebrate milestones and achievements
When families share their experiences, they create a ripple effect of support that extends far beyond their own situation. A simple story about how to help a toddler feel comfortable during dental visits can transform another family’s experience. A teenager’s account of navigating middle school with braces and speech therapy can provide invaluable guidance to younger children approaching those same challenges.
Building Community Through Smile Oregon
Smile Oregon is a 501(c)(3) nonprofit organization with a clear mission: to ensure every child in Oregon affected by a cleft or other craniofacial condition has access to the coordinated care they deserve by providing support, awareness, and education. Dr. Garfinkle co-founded the organization in 2008 and continues to serve on the Board of Directors, demonstrating his commitment to community support that extends far beyond clinical care. Watch Smile Oregon’s “Who We Are” video to understand the heart behind this organization: . Video link:https://vimeo.com/962608975?fl=pl&fe=vlWhat Smile Oregon Offers:
Financial Support: We encourage applying to receive a financial grant to support partial or full costs for treatment, often not covered by insurance aside from being an expensive reality many cannot afford. These grants can cover everything from travel expenses to specialized equipment, removing financial barriers that might otherwise delay or prevent necessary care. Educational Scholarships: The Smile Oregon Founders Award Scholarship is available annually for students with a cleft or craniofacial condition who are entering college or currently enrolled. This support acknowledges that the cleft journey continues into adulthood and that education opens doors to future success. Community Connection: The organization provides a space where families can connect with others who truly understand their experience. Whether it’s through organized events, online support groups, or informal meetups, these connections often become lifelong friendships built on shared understanding and mutual support. Advocacy and Awareness: Through events, educational materials, and community outreach, Smile Oregon works to increase awareness about cleft conditions and advocate for better resources and support systems.Real Stories, Real Impact
The families served by Smile Oregon and treated at Garfinkle Orthodontics represent a diverse community united by their commitment to helping their children thrive. Their stories illustrate the profound impact that community support can have on the cleft journey.The Zahniser Family: A Decade-Long Partnership
Kelly Zahniser has trusted Dr. Garfinkle with all three of her sons’ orthodontic care, with one receiving specialized cleft palate treatment since birth. “Dr. Garfinkle is part of my son’s cleft palate team. This team has taken his mouth through all stages of the cleft journey. They are so precise, kind and knowledgeable,” Kelly shares. Her experience highlights how long-term relationships with specialized providers create continuity of care that extends far beyond individual appointments.Kari’s Story: Ten Years of Exceptional Care
Kari Reed’s daughter has been receiving cleft lip and palate treatment from Dr. Garfinkle for an entire decade. “We have received nothing but the best care and incredible results! The entire team is welcoming, friendly and very accommodating,” Kari explains. What stands out in her story is how Dr. Garfinkle and Dr. Ryan consistently encourage her daughter throughout the lengthy treatment process, building confidence alongside creating beautiful smiles.Alexis and David: Partnership from Day One
Alexis LaBelle describes her family’s experience with remarkable clarity: “My son was born with a cleft lip and palate and Garfinkle has been with him every step of the way. I wouldn’t have wanted to work with anyone else.” Her son David’s journey exemplifies how having the right team makes all the difference in both clinical outcomes and family experience.Melinda’s Perspective: Growing Up Together
Perhaps no story illustrates the long-term commitment better than Melinda Dumas’, whose son has been under Dr. Garfinkle’s care since he was just two weeks old. Now eight years old with braces, her son has literally grown up with Dr. Garfinkle as part of his healthcare team. “He is kind, caring and very knowledgeable. The clinic has an upbeat vibe and every staff member seems to love their job,” Melinda observes. Meet Dahlia: Watch how advanced treatment options like Invisalign can help young people with cleft conditions achieve amazing results: <iframe width=”560″ height=”315″ src=”https://www.youtube.com/embed/y_2Sqzqgqac?si=68oBoceE-97a8nmt” title=”YouTube video player” frameborder=”0″ allow=”accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share” referrerpolicy=”strict-origin-when-cross-origin” allowfullscreen></iframe> Dahlia was born with a cleft lip and palate, creating a need for multiple surgeries and rounds of orthodontics to create a healthy and functional smile. The Invisalign ARK program helps doctors provide clear aligner treatment to teens and kids with different health conditions that may have limited options to achieve a straighter smile.The Ripple Effect of Advocacy
Individual stories become powerful tools for advocacy when shared strategically and with purpose. Family voices carry weight that statistics alone cannot match. When parents testify at insurance hearings about the importance of covering orthodontic treatment for children with cleft conditions, their personal stories create understanding and empathy that can lead to policy changes.Areas Where Advocacy Makes a Difference:
Insurance Coverage: Many families face battles with insurance companies over coverage for treatments deemed “cosmetic” rather than medically necessary. Advocacy efforts have led to improved coverage policies and clearer guidelines for what constitutes essential cleft care. School Support: Parents working together have successfully advocated for better accommodations for children with speech differences, hearing issues, or frequent medical appointments related to their cleft care. Public Awareness: Community advocacy helps dispel myths and misconceptions about cleft conditions, creating more inclusive environments for affected children and families. Research Funding: Collective advocacy efforts support funding for research into causes, prevention, and improved treatment methods for cleft and craniofacial conditions.Creating Lasting Change Through Connection
The work being done through organizations like Smile Oregon extends far beyond individual treatment outcomes. It creates a foundation for systemic change that benefits current and future families facing cleft conditions.The Multiplier Effect:
When one family receives support and their child thrives, that success story inspires and guides other families. A single scholarship recipient may go on to become a healthcare professional who specializes in cleft care. A parent who received mentoring during their child’s early years often becomes a mentor themselves, creating an ever-expanding network of support. Dr. Garfinkle’s role as both a clinical provider and community advocate exemplifies how healthcare professionals can contribute to this broader mission. His expertise in cleft palate and craniofacial orthodontics combined with his commitment to community building through Smile Oregon demonstrates that excellent medical care and strong community support work hand in hand.Beyond Treatment: The Whole Family Journey
While medical and orthodontic care addresses the physical aspects of cleft conditions, community support addresses the emotional, social, and practical aspects that are equally important for long-term success and well-being.Supporting the Whole Family:
Siblings: Brothers and sisters of children with cleft conditions often have their own questions and concerns. Community events provide opportunities for sibling connections and support. Extended Family: Grandparents, aunts, uncles, and family friends benefit from education and community resources that help them provide appropriate support. Parents: The emotional journey of parenting a child with a cleft condition includes unique joys and challenges. Peer support from other parents who understand this experience is invaluable. Patients Themselves: As children with cleft conditions grow into teenagers and adults, community connections help them develop advocacy skills, leadership abilities, and the confidence to share their own stories.Looking Forward: The Future of Cleft Community Support
The community that has grown around cleft care in Oregon and beyond continues to evolve and expand. Social media has connected families across geographical boundaries, creating virtual support networks that complement local resources. Professional conferences now regularly include family panels and patient voice sessions, recognizing that those with lived experience have essential contributions to make to clinical care and research.Emerging Opportunities:
Technology Connections: Virtual support groups and online resources make community support more accessible to families in remote areas or those with transportation challenges. Mentorship Programs: Formal mentorship matching between experienced families and those new to the cleft journey creates structured support opportunities. Young Adult Networks: As children with cleft conditions grow into adults, new support networks focused on college transitions, career development, and adult relationships are emerging. Professional Partnerships: Increasing collaboration between patient advocacy organizations and healthcare providers leads to more family-centered care approaches.Your Role in the Community
Whether your family is just beginning the cleft journey or you’re years into treatment, there are meaningful ways to contribute to the community that supports families with cleft conditions.Ways to Get Involved:
Share Your Story: Your unique experience and insights can provide hope and practical guidance to other families. Volunteer at Events: Community walks, awareness campaigns, and fundraising events rely on volunteer support from families who understand the mission. Smile Oregon welcomes volunteers who are passionate about making a difference and want to contribute their time and skills to support programs and events. Join the Smile Squad: Make a difference for kids impacted by cleft and craniofacial conditions all year long by joining Smile Oregon’s monthly giving program. Sponsor Events: Businesses and individuals can support upcoming events through sponsorship opportunities. Mentor Other Families: Experienced families can provide invaluable guidance to those just starting their journey. Support Advocacy Efforts: Participating in legislative advocacy, insurance appeals, and public awareness campaigns helps create systemic change. Connect and Support: Sometimes the most powerful contribution is simply showing up for other families, listening to their concerns, and sharing in their celebrations.The Transformation Continues
The stories that emerge from the cleft community are stories of resilience, growth, and transformation. They remind us that challenges can become strengths, that differences can become sources of pride, and that community support can turn individual struggles into collective advocacy for positive change. At Garfinkle Orthodontics, we’re honored to be part of these stories. We provide the clinical expertise through Invisalign and Damon Braces treatment, while organizations like Smile Oregon provide the community support that helps families thrive throughout their journey. Every child with a cleft condition deserves excellent medical care, but they also deserve to know they’re part of a community that believes in their potential, celebrates their achievements, and stands ready to support them through challenges. When clinical excellence and community advocacy work together, the result is transformation that extends far beyond any single treatment or procedure. The stories continue to unfold, and each one adds to the rich tapestry of community support that makes the cleft journey one of empowerment rather than isolation. Your story matters, your voice has power, and your participation in this community can create lasting change for families today and in the future.We're conveniently located in SW Portland, serving Beaverton, the Pearl District, Lake Oswego, and surrounding areas.
Ready to Join Our Cleft Community?
If your child has been diagnosed with a cleft lip, cleft palate, or other craniofacial condition, you don’t have to navigate this journey alone. Dr. Garfinkle’s specialized expertise and our connection to the supportive Smile Oregon community means your family will have both exceptional clinical care and ongoing support every step of the way. Text or call us at 503 • 246 • 9802 to schedule your consultation and learn how we can help your child thrive.