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Dallas Morning News: Team at Scottish Rite for Children Awarded Grant From National Institutes of Health For Rare Disease Research

Dallas Morning News: Team at Scottish Rite for Children Awarded Grant From National Institutes of Health For Rare Disease Research

by | Mar 27, 2025 | Press Coverage, Research & Innovation

Researchers at Scottish Rite for Children and UT Southwestern Medical Center recieved a $420,000 grant to test a gene therapy they believe may lead to a breakthrough treatment for a disease that causes children to lose nerve and motor control by the age of 5.

The two-year project, led by principal investigator Jonathan J. Rios, Ph.D., and funded by the National Institute of Neurological Disorders and Stroke, aims to develop and test a new treatment for Childhood-Onset Striatonigral Degeneration (SNDC). SNDC is a progressive neurodegenerative disorder affecting children, leading to loss of nerve and muscle function. Currently, there are no treatments to slow, reverse or stop the progression of this condition.

“The funding provided by this award ensures we can complete the research needed to move this potential new therapy closer to treating children with this devastating condition,” said Rios, who is the director of Molecular Genetics at Scottish Rite, as well as an associate professor in the Eugene McDermott Center for Human Growth and Development and the Departments of Pediatrics and Orthopaedic Surgery at the University of Texas Southwestern Medical Center (UTSW).

SNDC is caused by genetic mutations that affect a child’s neurological functions. Over time, children with the condition experience muscle spasms, trouble with balance and posture and tremors. Children with SNDC may lose the ability to speak or move on their own. The condition is rare and affects an estimated one to nine in 1,000,000 people. Without treatment, the symptoms of SNDC can be debilitating, and in some cases fatal. The gene therapy being studied at Scottish Rite would be the first treatment for SNDC if eventually approved by the FDA.

“Many parents of children with rare diseases struggle with finding hope for a cure,” says Robert L. Walker, president/CEO of Scottish Rite. “Scottish Rite is committed to giving these children and their families the support they need through our research discoveries.”

Read the full article shared by the Dallas Morning News.

Get to Know Our Staff: Kelly Jeans, Movement Science

Get to Know Our Staff: Kelly Jeans, Movement Science

by | Mar 26, 2025 | Research & Innovation, Spotlight

What is your job title/your role at Scottish Rite?
I am the Division Director of the Movement Science Lab (MSL) in Dallas. I also am a researcher with an interest in understanding treatment outcomes in the patients we treat here at Scottish Rite.

What is the most fulfilling part of your job?
The key to successful research is having a strong team of collaborators with technical and clinical expertise. The most fulfilling part of my job is seeing our research efforts directly impact clinical care.

What makes Scottish Rite a special place to you?
The staff is what makes Scottish Rite a special place. The people here are friendly and genuinely happy to help.

What made you choose a career in health care?
I was looking for a research job in biomechanics and found Scottish Rite’s job posting for Clinical Gait Lab Biomechanist. When I came to interview, I got to sit in on the lab’s monthly research meeting. That’s when I knew this was a perfect fit. What makes my career even better is that I get to work with kids and do research!

What is something unique you get to do in your position?
I get to study movement patterns using 3D motion capture, which I think is super cool!

What’s your favorite thing to do outside of work?
Gardening (but not weeding), growing plumerias, travelling and sewing.

Do you have any hidden talents?
I am the “fixer” of all things in my house. Whenever I tell my family something is beyond repair, they get deeply disappointed.

Where are you from and what brought you to DFW?
I grew up in the San Francisco Bay Area and graduated from college in Southern California. I moved to Dallas to join the MSL team.

If you could travel to anywhere in the world, where would you go and why?
I love to travel and have a long bucket list. If I had to pick just one trip, I would really love to make it to Australia and New Zealand. I want to dive into the great barrier reef and do the “Lord of the Rings” tour in New Zealand.

If you had to pick one meal to eat for the rest of your life, what would it be?
Only one meal for the rest of my life?!  If I had to choose, I would have to go with fresh seafood, pasta, a salad and a Diet Dr. Pepper.

What movie do you think everyone should watch at least once?
“Elf.” Will Ferrell still cracks me up after all these years.

What was the first concert you attended?
I want to say Whitney Houston or George Michael, but I can’t remember who came first.

Favorite DFW hidden gem?
I would recommend Gloria’s for their swirl margarita and pupusas.

If you were to have a movie based on your life, which actress/actor would you choose to play your character?
I would pick Drew Barrymore. She seems to be a positive person who might appreciate a good garden.

What is some advice you would give your younger self OR what’s the best piece of advice you’ve received?
The best advice I received was to get on the board of a professional society. It has really been wonderful working with other health care providers who share a passion for treating children.

The Power of Personalized Care for Bo’s Bright Future

The Power of Personalized Care for Bo’s Bright Future

by | Mar 25, 2025 | Clubfoot & Foot Disorders, Pediatric Developmental Disabilities

From the moment patients and their families walk through the doors of Scottish Rite for Children, they find more than just outstanding pediatric orthopedic treatment. They immediately enter a culture of care, just like 2-year-old Bo and his family did.

At 3-months-old, Bo and his family came to Scottish Rite for his diagnosis of sacral agenesis and clubfeet. Sacral agenesis, a rare type of spina bifida, is a condition which occurs when the lower spine around the tailbone, or sacrum, does not fully develop. This condition can affect a child’s legs, lower back, and digestive and urinary tract. He also has clubfeet, which means his feet were severely turned inward and pointed downward at birth.

Bo’s care team consists of multidisciplinary experts from Scottish Rite’s Spina Bifida Program. This team includes experts from Developmental Pediatrics, Neurosurgery, Urology, Orthopedics, Physical Therapy, and Orthotics & Prosthetics, among others to give Bo holistic care for his every individual need. 

For his clubfeet, Bo’s care is led by Megan E. Johnson, M.D. — medical director of Ambulatory Care, pediatric orthopedic surgeon and program director of the Dorothy & Bryant Edwards Fellowship in Pediatric Orthopedics and Scoliosis.

“One of my favorite things is to see how my son’s doctors and care team members treat him,” says Katherine, Bo’s mother. “They always remember who he is, and they even treat him like a celebrity. They never make us feel like he is another patient.”

Together, Bo’s care team collaborates to provide him with a wide variety of treatment. To correct his clubfeet, orthotists created custom ankle-foot orthoses, which are assistive devices used to stabilize the foot and ankle. This year, he received his first ever wheelchair, which was adjusted to allow him to mobilize more independently.

“Our overall experience is unlike anything I’ve ever experienced,” Katherine says. “Every single person at Scottish Rite is so amazing. You feel like you’re at home. You are somebody at Scottish Rite, and they truly show that they love my son.”

While Bo’s care journey is just beginning, he is on the right track. With his care team and family supporting him, Bo continues to make more improvements in navigating his conditions outside of the clinic. Now, his family shares that Bo’s favorite activities are wheeling around in his wheelchair and being the best big brother possible.

“For Bo, Scottish Rite for Children is a place where he can see children like him and be himself,” Katherine says. “For me, it means my son is getting the best care possible.”

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Texas Country Reporter: The Artistic Prosthetist Dwight Putnam

Texas Country Reporter: The Artistic Prosthetist Dwight Putnam

by | Mar 25, 2025 | Press Coverage, Prosthetics & Orthotics, Spotlight

Dwight Putnam discovered that his artistic talent could transform the lives of children at Scottish Rite for Children. He transitioned from working as a sculptor to a prosthetist, finding his calling in crafting prostheses that empower children with limb differences. For the past 18 years, Dwight has served as an integral part of Scottish Rite for Children’s in-house Orthotics and Prosthetics department, designing, fitting, and delivering custom-made prostheses to address each patient’s specific needs.

“It is really rare for somebody to have a job that shows the immediate contribution you have to someone’s well-being,” Dwight says. “To be able to just be a part of that process is awesome.”

To learn more about Dwight’s story, watch his segment shown on the Texas Country Reporter.

Get to Know Our Staff: Claire Clark, Research

Get to Know Our Staff: Claire Clark, Research

by | Mar 19, 2025 | Spotlight

What was your first experience at Scottish Rite?
My first experience at Scottish Rite was as a patient for one of my many sports-related injuries in middle school. I began shadowing at Scottish Rite in high school and during college. Then, I became a Clinical Orthopedic Research Assistant (CORA) after graduating from Texas Christian University (TCU) in 2022.

What was your first experience with research at Scottish Rite?
When I started shadowing at Scottish Rite during high school, I was working with the research team a few days every week. Early on, I had the opportunity to learn about the research process and the importance of research in medicine and its importance in the medical field.

What has been your favorite project to work on and why?
My favorite project was a study of osteochondritis dissecans (OCD) of the knee and its relationship to coronal malalignment of the lower extremities. I have enjoyed taking this project from start to finish under the guidance of my mentors, which include Henry B. Ellis, M.D., Philip L. Wilson, M.D., Chuck Wyatt, M.S., CPNP, RNFA and Ben Johnson, P.A-C., A.T.C.

What has been your favorite experience and why? (Something outside of your immediate job duties such as observing surgery, attending a conference, etc.)
My favorite experience as a CORA has been the opportunity to shadow regularly. Shadowing helps apply what I am learning through research in both clinical and surgical settings. I have enjoyed the lifelong friendships I have built with my fellow CORAs, as well as other members of the research and clinical teams.

How has your experience impacted your career path?
My experience at Scottish Rite has been invaluable to my career, as research is such an important part of medicine. As a CORA, I have been immersed in an environment that has taught me about research, medicine and patient care, among many other lessons I would not have had the opportunity to learn so early in my career.

What’s next for you?  What specialty do you plan to pursue?
In July, I plan to enter the class of 2029 at the Burnett School of Medicine at TCU! I graduated from TCU in 2022, so I am thrilled at the idea of returning to Fort Worth for medical school. I hope to pursue a career in orthopedic surgery.

What advice do you have for students who want to go to medical school?
My biggest advice for other students wanting to go to medical school is to not rush the process. Taking gap years before medical school was such a blessing and allowed me the opportunity to gain invaluable research and clinical experience as a CORA. It also gave me the chance to have meaningful life experiences, travel and explore new hobbies.