The Lumpkin Family
How long did it take to receive diagnosis?
Mariah’s diagnosis took three long months. We went from allergy testing to appointments with an optometrist and even a urologist, searching for answers that never quite fit. Each visit felt like another door closing, until finally — after weeks of uncertainty — we received the correct diagnosis and could begin understanding what Mariah was truly facing.
What has been your biggest challenge accessing care?
Our biggest challenges have been the lack of a pediatric rheumatologist close to home and the struggle to get our insurance provider to approve Mariah’s recommended treatment plan. Navigating both at the same time has been overwhelming, especially when all you want is timely care for your child.
How far do you travel to see a JM specialist?
Our family travels 3½ hours each way to see a JM specialist. Every appointment becomes a full‑day trip, but we make the drive because it’s where Mariah gets the care she needs and deserves.
What resources have helped most?
The JM Parents and Caregivers Facebook group has been a lifeline. Hearing from families who understand this journey has brought comfort and clarity. I’ve also had the opportunity to connect with another JM family who lives about 1½ hours away, and that support has been invaluable.
What gives you hope?
Mariah gives me hope every single day. The level of resilience she has shown throughout this journey has been truly inspiring. She constantly reminds us, “I’m okay,” “I’m brave,” and “It’s going to be okay.” Her strength encourages our entire family. Most of all, my faith in God reminds me that we are never walking this journey alone.
Why do you Walk Strong?
I Walk Strong to raise awareness for Juvenile Myositis, to honor Mariah and every JM warrior fighting with courage, and to celebrate those who have reached remission. Every step we take helps shine a light on JM, supports research, and brings hope to families navigating this journey.
The Kinney Family
Tell us about yourself, your family, and the state you’re representing in Walk Strong Across America.
We live in the San Diego area, and one of the challenges of Caden’s illness is its impact on his active lifestyle and our efforts to help him have a normal childhood in sunny Southern California. My husband and I both work in the medical field, so we have deep appreciation for our amazing medical team — and frustration with the limited knowledge about DM and the treatment options currently available.
Who are you walking for, and what inspired you to participate in Walk Strong Across America this year?
We are walking for our son Caden, and for everyone experiencing the difficulties of DM or other autoimmune diseases. We’ve been inspired by his bravery in the face of an uncertain diagnosis and the challenges of the condition and its treatment. We want to do whatever we can to help advance research to better understand DM and how to effectively treat it.
What would you like people across America to know about juvenile myositis and the importance of funding research?
DM is an invisible disability, which makes life more difficult for patients and families because so few people truly understand the condition and what we are going through. Another concern is that because it is so rare, there is far less funding available for research than for most other conditions. We hope that by participating in this fundraising campaign, we can help raise critical research funds as well as general awareness about DM.
What gives you hope as families from all 50 states come together to support research and a future free from JM?
It brings us so much hope to see people unite for this cause. Knowing that families across the country are coming together to support research and a future free from JM reminds us that progress is possible when our community stands together.
The Gilbert Family
Tell us about yourself, your family, and the state you’re representing in Walk Strong Across America.
We are a family of five—Patricia, her older brother and sister, and our beloved Boston Terror (terrier). We are proud to represent South Carolina and are grateful for the strong support we receive from our extended family and friends, especially those back in New Jersey.
Who are you walking for, and what inspired you to participate in Walk Strong Across America this year?
We are walking for our amazing and beautiful 11-year-old daughter, Patricia Violet. We were inspired by the incredible community of researchers and physicians we met at the Cure JM Family Event at Duke Children’s Hospital. Seeing their passion and dedication to finding better treatments—and ultimately a cure—gave us hope for the future. Their work is helping pave the way for a better quality of life for children living with juvenile myositis.
What would you like people across America to know about juvenile myositis and the importance of funding research?
Although juvenile myositis is an ultra-rare disease with limited treatment options, raising awareness is incredibly important. There are children and families across the country facing this diagnosis every day. Advances in medical research, including gene and targeted therapies, are happening at an exciting pace. We remain hopeful that with increased awareness, advocacy, and funding, future generations of children diagnosed with JM will have more effective treatments—and perhaps one day a cure.
What gives you hope as families from all 50 states come together to support research and a future free from JM?
The days and weeks following a JDM diagnosis can feel overwhelming and isolating. Meeting other Carolina families at the Duke JM event reminded us that we are not alone. Seeing families from all 50 states come together through Walk Strong Across America gives us even greater hope for the future. There are so many brilliant researchers, physicians, and advocates working tirelessly toward better treatments and a cure. By participating in this walk, we are helping support that mission and bringing us one step closer to a future free from JM.
The Carpenter Family
Tell us about yourself, your family, and the state you’re representing in Walk Strong Across America.
Our entire family and close friends walk alongside us, and we’re proud to represent West Virginia. Bringing more awareness of Juvenile Myositis has always been a personal goal for me. Many days, Adley may look and act like a perfectly healthy child, but those closest to her know the battle happening inside her body.
Who are you walking for, and what inspired you to participate in Walk Strong Across America this year?
I am Alyssa Carpenter, and my family and friends walk for my daughter, Adley. We’ve held a Walk From Home event for the past two years, and we’re excited to represent West Virginia this year in the Walk Strong Across America initiative. It’s heartwarming to see everyone come together around one goal: raising essential funds for research that will hopefully lead to a cure for our kids.
What would you like people across America to know about juvenile myositis and the importance of funding research?
The more we can spread awareness, the better understanding others will have of this disease. Sharing information helps people recognize the signs earlier — something that didn’t happen in Adley’s case — and earlier diagnosis can lead to faster treatment and better care for all of our children.
What gives you hope as families from all 50 states come together to support research and a future free from JM?
Seeing families across the country unite gives me hope. Every person who walks, donates, or shares our story brings us one step closer to the breakthroughs our kids need.
The Ortiz-Meza Family
Tell us about yourself, your family, and the state you’re representing in Walk Strong Across America.
We are the Ortiz-Meza family from California’s Central Coast, proudly representing the Golden State in Walk Strong Across America. Our family enjoys spending time together and making memories wherever possible. Whether it’s a day at the beach, playdates at local parks, or exploring new places, we cherish every opportunity and time together.
Since Leilani’s diagnosis, we continue to learn how to balance medical appointments, treatments, and the challenges of living with Juvenile Dermatomyositis while still celebrating the moments that make childhood special. We admire Leilani’s courage throughout her JDM journey. Her strength and resilience inspire us every day. Through fundraising, advocacy, and community outreach, we hope to continue raising awareness of JDM and JM while supporting other families navigating similar experiences.
What gives you hope as families from all 50 states come together to support research and a future free from JM?
What gives us the greatest hope is the undeniable power of community! When you are first diagnosed with a rare disease, you can feel incredibly lonely, but seeing families from every single corner of the country come together, lock arms, and support one another for Walk Strong Across America reminds us that we are part of a fierce, mighty, unstoppable village.
There is immense strength in our shared stories, collective resilience, and unified voices. Along this journey, we have learned that hope grows when families come together, share their experiences, and support one another through both the challenges and victories. Every family that participates helps spread awareness, educate others, and build momentum for the research that will lead to better treatments and, ultimately, a cure. Most importantly, seeing our daughter Leilani witness the outpouring support gives her the strength to keep moving forward. Knowing that she is surrounded by a community that believes in a brighter future reminds us that we are never fighting this battle alone. Together, every family, advocate, donor, and research plays a role in moving us closer to a future free from JDM or JM. Let’s CureJM!
Who are you walking for, and what inspired you to participate in Walk Strong Across America this year?
We are walking for our brave and resilient 4-year-old daughter, Leilani, who was diagnosed with Juvenile Dermatomyositis (JDM). Leilani is a happy little girl who loves playing dress up, doing arts and crafts, and making everyone smile. Watching her navigate her daily realities of this rare autoimmune disease, including intensive treatment, medications, and frequent medical appointments, is our greatest inspiration.
We were inspired to participate in Walk Strong Across America to raise awareness for Juvenile Dermatomyositis and Juvenile Myositis while helping raise funds for critical ongoing research that supports everyone fighting and affected by this rare autoimmune disease. Participating in Walk Strong Across America allows us to turn our family’s challenges into action while connecting with other families who support and understand this journey. Together we can amplify our voices, fuel the breakthroughs needed for better treatment, and help pave the way towards a cure!
What would you like people across America to know about juvenile myositis and the importance of funding research?
We would like people across America to understand that Juvenile Dermatomyositis and Juvenile Myositis are rare, complex, and often invisible diseases. These conditions cause a child’s immune system to attack healthy muscles, skin, organs, and other parts of their body, leading to profound fatigue, pain, weakness, and challenges that can take away simple childhood joys and daily life activities. Since these diseases are so rare, they are often difficult to diagnose and can be misdiagnosed, leaving families searching for answers while the disease continues to progress. For many families, the journey to diagnosis can be long and overwhelming, adding uncertainty to an already difficult situation.
Research funding is the lifeline for families affected by JDM and JM. Because relatively few children are diagnosed every year, these conditions do not always receive the attention and resources they deserve. Dedicated funding helps researchers better understand the disease, identify important markers, develop more targeted treatments, and ultimately move closer to a cure. Every amount invested in research brings hope to families like ours closer to better treatments, improved quality of life, and ultimately a cure.
