At Entrada, we recognize that disparities in many forms add to the challenges for people living with serious diseases, including Duchenne muscular dystrophy (Duchenne). In an effort to uplift communities who are often overlooked by today’s healthcare system, we launched Entrada DREAMS.
DREAMS is a competitive annual grants program designed to fund efforts that better identify, understand and reach the entire Duchenne community.
The impact of DREAMS has already been brought to life by the incredible organizations selected as the first grant recipients in 2023. Now more than a year later, we’re shining a light on their efforts to support all members of the Duchenne community and their progress made since receiving the inaugural grant.
About the Neurology and Neuromuscular Care Center
Neurology and Neuromuscular Care Center (the Center) is a non-profit private practice led by Dr. Diana Castro with the mission to provide care to all patients with neuromuscular conditions like Duchenne, especially those from underrepresented backgrounds who are currently underserved, uninsured or underinsured.
Dr. Castro is a board-certified neurologist and neuromuscular physician who founded the Center to provide state-of-the-art, compassionate care to all children and adults with neuromuscular conditions.
After working in the healthcare system for over 10 years, Dr. Castro felt that her ability to provide patients with the time, attention and resources needed for proper care was stifled by the red tape and bureaucracy that riddles the system. It was this ambition to offer unrestricted access to high-quality care that inspired Dr. Castro to found the Center.
“I’m really privileged and blessed to have [the Center], because it’s like a dream place where you can see patients with all the time in the world...we don’t have to close our doors to anybody,” said Dr. Castro.
The Center takes a multi-disciplinary approach to treatment – offering care in the areas of neurology, physical therapy, equipment evaluation, nutrition, respiratory therapy, pulmonology and cardiology. Another critical component of care that was previously missing was mental health support.
Mental Health Support: A Gap to be Filled
Navigating the intensive care plans that often come with a Duchenne diagnosis can be difficult and take a toll on the mental health of patients and their families. The team at the Center recognized the need for support in this area, but didn’t have the funding or resources to bring in a dedicated mental health professional.
Funding provided by the Entrada DREAMS Grant enabled the clinic to hire a part-time Patient Navigator, its first mental health professional. This individual is helping to address gaps in socioeconomic health needs by providing emotional and social support to people and families living with Duchenne.
“I can tell you right now from a budget standpoint, we were looking at this position not coming into play until late 2024 or 2025...I can honestly say that if it hadn’t had been for the DREAMS Grant we received from Entrada, the position would have sat unfilled in the background,” said Siera Grano, RN, MSN, former Practice Manager who now supports the Center as a registered nurse on an as-needed basis.
Given that the Center treats many individuals whose first language is Spanish, bringing in a mental health professional who is not only bilingual, but whose native language is Spanish, has ensured that all patients and families feel heard and empowered throughout their care.
“I have a large population of Hispanic patients – around 45% of them are Hispanic. Having a bilingual person has really made an impact for those families,” said Dr. Castro.
Within two months of joining the team, the Patient Navigator had compiled a comprehensive book of mental health resources that families can look to for support when they’re not in person at the Center.
The Patient Navigator has also been able to implement mental health screening into the Center’s multidisciplinary approach and support with the appropriate follow-ups and referrals to make sure patients and their families receive the psychological care they need.
“There were things that we wouldn’t have gotten to without [the Patient Navigator] and still wouldn’t. Here’s one example…the Patient Navigator worked with one family to get them funded to go to the CureDuchenne FUTURES National Conference in Florida. A family who has never been on a plane, got full airfare and got to stay at the resort. Seeing the pictures coming out of that, and what she was able to do, you could just tell that this kid’s day had brightened,” said Siera.
And that doesn’t even begin to cover the important information and support that the family received about Duchenne as well as the connections that they made while at the conference.
Recognizing the importance of social connection, the Patient Navigator also encouraged this individual to join a wheelchair soccer league. This sparked relationships with new friends who can relate to his unique lived experience, while enabling him to focus more on being a kid, than a kid with Duchenne.
“There are multiple ways I learned through this grant that mental health can be impacted. It doesn’t have to be psychiatry, psychology or medication. There really is so much more to it,” said Siera.
Looking Ahead
Since the Center first brought in the Patient Navigator, her support has increased to a full-time capacity, with no plans to slow down. One of the team’s near-term goals is to establish regular support groups for Spanish-speaking mothers of children with Duchenne, as this is a population that tends to be overlooked and underserved in the healthcare system.
As the Neurology and Neuromuscular Care Center works to dismantle today’s barriers to equitable care, the team remains driven by the potential to make a meaningful difference for those living with Duchenne.
“When you’re passionate...you can really achieve meaningful things that fulfill you, the patients and families,” said Dr. Castro.
For anyone looking to learn more about Neurology and Neuromuscular Care Center and support its efforts to provide care to children and adults with neuromuscular conditions, visit the Center’s website.
Interested in applying for a future DREAMS Grant? Please visit the Entrada DREAMS Grant Program webpage where you can find applications for this year’s program.
