In 2011, Dr. Jeffrey Tramonte stepped out of his comfort zone in the hopes of starting an ALS clinic in Round Rock. This year, the Emory Bellard ALS Clinic at Baylor Scott & White Health commemorates a decade of serving Texans with ALS.

Discovering the Impact of Multidisciplinary Care

Dr. Jeffrey Tramonte first encountered ALS more than 15 years ago during his training at the University of Virginia. There he joined a Clinical Neurophysiology Fellowship that provided heavy exposure to EMG’s and neuromuscular patients. There was an ALS clinic on site where the fellows actively participated. “That was my first exposure to a multidisciplinary ALS clinic,” Dr. Tramonte shared. “I really felt like we were making a difference in the care and the lives of those patients. That was sort of the initial impact on me personally.”

In 2005, he joined Baylor Scott & White Round Rock, just Scott & White at the time, as the Director of Neurology. Dr. Tramonte noted that while they didn’t have an ALS Clinic at the hospital, ALS patients visited occasionally. His team offered initial diagnoses and second opinions, but “for long-term care, we’d refer those patients out,” he shared. Knowing the benefit of multidisciplinary ALS clinics, Dr. Tramonte considered the possibility of creating one in Round Rock.

A Serendipitous Beginning 

Dr. Tramonte recalls one fateful Friday afternoon when famous football coach, Emory Bellard, visited his lab for an EMG. Soon after that test, Bellard was officially diagnosed with ALS in February 2010. Dr. Tramonte knew the local family needed multidisciplinary care, but the nearest ALS clinic was hours away. He’d soon step out on a limb to change that.

“I did something I’ve never done before.” Dr. Tramonte asked the Bellard family if they wanted to sponsor an ALS clinic and name it in Emory’s honor. He was shocked when they said, ‘Yes!’ From there, the process moved rather quickly. “Within days he was getting me in touch with Coach Jackie Sherrill,” he shared. “He was integral in helping to rapidly put something together.”

In November 2010, the 12^th Man Kick Off Team Foundation honored Emory Bellard at their annual scholarship dinner. There, the Foundation and their guests raised $100,000 and announced the creation of a new ALS clinic in his honor. Dr. Tramonte noted that seeing all the people there who were impacted by Emory Bellard inspired him.

The donations came from other coaches that came after him, other football players and other lives that he touched…you can imagine the impact this head coach had.

Just months later, the Emory Bellard ALS Clinic at Baylor Scott & White Health opened. “It rapidly came together, it was really incredible,” Dr. Tramonte shared.

Celebrating a Decade of Milestones

This year marks 10 years since the clinic started. “I’m really proud of the work that we do and the team that we have, and the care and compassion we provide to not only the patients but to their family as well,” Dr. Tramonte noted.

As he reflected on this anniversary, he remembered their accomplishments from over the years. “I think our milestones are being an ALS Association Certified Clinic.” This network of clinics gives Texans with ALS better access to evidence-based multidisciplinary care.

He explained how the clinic also participates in the Northeast ALS Consortium (NEALS), contributing critical data for research. And at one time the clinic in Round Rock briefly hosted a clinical drug trial. “I’m optimistic about the future of ALS, and the research that’s being done, and the search for a cure,” Dr. Tramonte shared.

Most importantly, he joyfully commented how the clinic has improved its quality of care over the last decade. “We’ve gotten much better over the years at collecting the data we need to collect, providing the care as efficiently as possible, being sensitive to the needs of our patients and their families.”

The Life-Changing Impact of Multidisciplinary Care

Dr. Tramonte emphasized that when a patient’s care is not centralized to one location or team, it’s disjointed. There are problems with communication between providers, consistency of care, and other issues that are detrimental to the patient. “Getting your care under one roof, it’s one-stop shopping if you will…we’re making sure that we’re addressing all of their needs,” he noted.

Access to multidisciplinary care is scientifically proven to extend the lives of those living with ALS. For over 15 years, Dr. Tramonte himself has witnessed firsthand how it improves quality of life for his patients. He’s a firm advocate for this model and hopes to continue improving his clinic until one day, there is a cure for ALS.

Taking a step back from where this all started 10 years ago to where we are now, we’ve seen an incredible expansion of our clinic. There’s been a lot of enthusiasm for ALS. If we continue along that trajectory, you can only imagine that we will only continue to get better.

Watch Dr. Tramonte discuss more of the benefits of multidisciplinary ALS care in this exciting panel: ALS Clinical Care and the Future of Research!

View the Recording

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Neurologist Dr. Carlayne Jackson leads the ALS multidisciplinary clinic at UT Health San Antonio. This year, the clinic reached an incredible milestone of serving the ALS community in Texas for 25 years. From 1996 to 2021, their mission remains the same—provide excellent multidisciplinary care for Texans living with ALS.

A Humble Beginning

Flash back to the 80s, where in San Antonio Mary Klenke connected with the ALS Association of America. They gave her the names of 7 people living with ALS in her local area. She started a small support group that only grew over time.

Mary soon contacted Dr. Allen Gruber, the neurologist at UT Health Science Center in San Antonio. She explained that she was volunteering with those living with ALS and offered to assist with any new patients. Dr. Gruber later moved on and Dr. Richard Barohn took his place. He would call Mary each time he made a new diagnosis.

Concurrently, Dr. Jackson had just finished her residency was building her experience with ALS as a disease. “Dr. Barohn was my mentor and he had started to do clinical trials in ALS during my fellowship in 1991.” Dr. Barohn soon took another opportunity at UT Southwestern in Dallas, but not before he introduced Mary to Dr. Jackson.

His departure left Dr. Jackson to serve as the principal investigator in the ALS trial using ciliary neurotropic growth factor for ALS patients. “It was through that trial that I really got connected with the ALS community and the ALS patients and really developed a passion to care for them specifically.”

The further Dr. Jackson and her team moved through the trial, the more they observed the benefits of multidisciplinary care.

Pursing the Multidisciplinary Care Model

During the clinical trial, Dr. Jackson observed her patients once a month, in addition to a physical therapist performing evaluations. “We saw that that kind of multidisciplinary team was just so much more effective in addressing patient issues and anticipating their needs.”

This model of care offered a different approach from Dr. Jackson’s usual routine. She would visit her ALS patients by herself once every three months, the standard of care at the time.

Dr. Jackson reached out to Mary again sometime around 1993. Mary’s group had officially joined the national organization as a local chapter. The ALS Association was also working on a multidisciplinary model of care. There were very few clinics in the United States, and even fewer in Texas.

Dr. Jackson shared that she wanted to start a clinic and hoped the ALS Association would sponsor it. At that point, the clinic at UT Health San Antonio worked to staff the full complement of team members. They continued to build connections with the local Texas Chapter and connect with the vision of the national organization. “We applied and we were formally certified in 1996,” Dr. Jackson said.

“The clinic is the best thing we have ever done for ALS patients because they get that professional care and receive hope. Even though we don’t have a cure yet, we can give our love, our care, our expertise, and be there for them,” Mary Klenke.

Expanding the Multidisciplinary Model in Texas

Twenty years after the creation of the ALS Clinic at UT Health San Antonio, Dr. Jackson found an opportunity to help expand multidisciplinary care in Texas. Her team found that many of their ALS patients traveled as much as 6 hours to make it to clinic. “Not only was it a huge time commitment, but also a financial burden,” Dr. Jackson noted. At the same time, the clinic noticed problems with access because slots filled up so quickly in the schedule.

A patient’s daughter approached Dr. Jackson’s team with an opportunity to partner with Doctors Hospital at Renaissance in Edinburg, TX. That hospital would provide PT, OT, and speech therapy, and Dr. Jackson’s team would secure the rest of the team. Dr. Zuka Khabbazeh, a neuromuscular trained physician, expressed interest in leading the team.

Dr. Jackson and members of her team traveled to the Rio Grande Valley to mentor this new clinic team. She and the San Antonio team even travelled to the hospital for the clinic’s grand opening in October 2017. “Those patients have really benefited,” she shared.

Milestones Along the Clinic Journey

Over the years, Dr. Jackson observed many milestones and accomplishments at the clinic at UT Health San Antonio. “I think one of the things I’m really proud of is that we’ve always had access to clinical trials.” She elaborated that these opportunities not only included clinical drug trials, but also studies to help understand ALS as a disease. These opportunities include blood donations for biomarker studies, including their information in data repositories, and more.

“Patients hopefully feel more engaged and know we’re working hard to solve the problem and not just to take care of them while they’re there.”

Dr. Jackson shared that the team has incorporated neuropsychology into the clinic team. “Now all patients receive baseline neuropsych testing to determine if there is any component of frontotemporal dementia.” This knowledge not only helps the clinic team administer proper care, but it also benefits the caregiver. Being able to address, cope, and care for behavioral changes is crucial for proper home care.

“We have counseling services now that we never had access to,” she shared. This brings another layer of full body and mind care at the multidisciplinary clinic. Over 25 years, these are just a few of the advancements Dr. Jackson’s team have made in the clinic.

Then and Now: Advancements to Care

When asked how standards of care have improved over the last 25 years, several things came to Dr. Jackson’s mind. “The biggest thing has been the respiratory intervention and our partnership with RQS.” Their ability to perform Pulmonary Function Tests at home, educate caregivers, and troubleshoot equipment is an amazing feat. She mentioned that this was especially beneficial during the pandemic when many clinics were unable to see patients in person.

“The other real breakthrough since COVID has been our use of telemedicine,” Dr. Jackson shared. Telemedicine breaks down barriers to access by allowing patients to connect with their care team from miles away. Dr. Jackson noted how some of the patients in the Rio Grande Valley still connect with their team via telemedicine.

If patients have urgent issues, she can join a video call with them instead of waiting for the clinic appointment. “Particularly for patients with mobility issues or patients that rely on tracheostomy ventilation, we can now provide that same level of care virtually.” She hopes to continue this practice in the future.

Community and physician partnerships also grew tremendously for Dr. Jackson’s clinic.

“We’ve been able to partner with gastroenterologists and pulmonologists, and people outside of that core clinic team…We’ve really been able to strengthen our relationships and connections with community resources. And a lot of that has to do with the ALS Association folks knocking on doors.”

These connections are lifechanging for the Texans with ALS in South Texas. “It’s really taken a long time to establish those relationships,” Dr. Jackson shared. “But I think once those people are hooked, they continue to provide amazing care and continuity of care.”

Then And Now: Advancements to ALS Research

Dr. Jackson and her team are dedicated to not only serving Texans with ALS, but also searching for a cure. “We’ve come a long way in terms of trying to make clinical trials more appealing to patients.”

She discussed how the HEALEY ALS Platform Trial is a testament to these advancements. UT Health San Antonio houses one of three HEALEY ALS Platform trials in Texas. “It’s a really unique trial design in the sense that we’re now studying five different compounds at the same time and only one placebo group.”

In the past, those living with ALS would apply for clinical trials. If accepted, they had a 50/50 chance of getting a drug. And there was no access to the treatments post trial. The HEALEY ALS Platform Trial changes everything. “Patients have a 75% chance of getting an active drug throughout the trials. And they are all guaranteed access to the drug in an open label extension after the trial is over.”

Dr. Jackson estimates that 25 years ago, only 5% of their patients were involved in research. Today, she estimates that at least half of their patients are participating in some type of research now. This includes not only drug testing, but also donating blood and their medical data. She notes that many of these opportunities were made possible through the advocacy efforts of ALS Texas.

A Culture of Hope & Positivity

With all the advancements in care and research, one thing remains constant at this clinic, a dedicated team. Dr. Jackson described a team that views the clinic as a ministry and not just a job. The team at UT Health San Antonio views itself as a family, and that sentiment extends to the patients.

The culture that we’ve been able to develop is one of hope and positivity and not doom and gloom. There’s a lot of laughter. There are some tears. But there’s a lot of laughter and joy that’s shared between team members and patients and caregivers, and that’s unique.

Like Dr. Jackson, many of the team members have been at the clinic for years and decades. When we can say decades of experience with ALS, that speaks volumes. Many patients have experiences where they interact with a local neurologist or doctor who has never seen an ALS patient before.

The care services team at ALS Texas frequently hear glowing reviews of the clinic. They note that Dr. Jackson has the perfect combination of knowledge, confidence, and an inviting bedside manner. When those living with ALS come to the clinic, they are not just seen as patients. The team is focused on their whole health and they feel that we truly care about them as a person. “That is certainly our goal,” Dr. Jackson shared joyfully.

What Will the Future Hold?

We asked Dr. Jackson what makes her excited for the future of this clinic. Immediately, shared, “My vision would be to try to expand our clinic to more than one neurologist so we can increase and improve our access.” She eventually hopes to develop another full clinic team and offer a full day clinic to serve more patients.

Dr. Jackson also wants to equip ALS caregivers to care for their loved ones at home. Her vision includes programs that would teach caregivers how to transfer, use a PEG, and more. She excitedly shared how the clinic has improved its psychiatry options over the last two years. “I think to have a faculty mental health provider would be a huge asset and something I would aspire to do.”

Today, the clinic serves an average of 250 Texans living with ALS each year. 50 – 60 of those patients are new every year with the rest being returning. “Because of the durability of the team and the experience of the team we’ve really been able to strengthen and anchor ourselves and the resources available in South Texas and Central Texas.”

Regardless of what the future holds for the ALS clinic at UT Health San Antonio, Dr. Jackson and her team are eager to serve our community for many more years to come.

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Read more about the HEALEY ALS Platform Trial