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.
Ron served in the U.S. Army from 1974 to 1977. “Some people went to college. I had 3 years of ROTC in high school and joined the Army right out of school,” he shared. Ron’s MOS (Military Occupational Specialty) was being a Voice Radio Operator with the 39th Signal Battalion, 128th Signal Company.
This group grew tremendously with more students and community mentors getting involved each year. Later, he helped found a Girls of Greatness club for young women. As Trace continued to impact his community in Weatherford ISD, he was promoted to Assistant Principal at Weatherford High School.
The Long Road to Diagnosis
We Can Make a Difference
From those living with ALS to their caregivers, to their children, grandchildren, and everyone in between, every member of every ALS family needs a hand to hold as they walk along the ALS journey.
ALS Texas is here to support your emotional needs on the ALS journey, but it all starts with you. Those living with ALS and caring for those living with ALS have the most wisdom to pass to others who will experience this disease. Take it from ALS family, Mike & Mary Busch, who shared, “When you get further into the journey, you realize you have valuable experience that you can share with others.”
Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.
In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.
Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.
By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.
The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.
Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.
Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.
She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.
You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!
Paul Tavano was diagnosed with ALS in August of 2009 after experiencing weakness in his hands and muscle spasms. In the midst of this news, Paul and his wife Kathy did not lose hope and instead took action. “I am convinced that there has to be a reason God chose me to deal with this disease. I believe the reason is to raise awareness of and ultimately help find a cure for ALS,” Paul shared.
Even from a young age, Norman’s grandmother instilled in him the importance of faith. It kept him strong when he moved to the U.S. from Jamaica as a child, and it led him to become a Chaplain in the Army. Norman served in the army for 32 years, 24 of those being as Chaplain, before retiring in 2016.
Today, Norman and Dee, his wife of 41 years, live in San Antonio. They have two daughters—one who lives with them at home and the second who recently got married and is teaching in Korea.
During this time, virtual support groups kept the Jones family connected with the ALS community. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles,” Norman shared.
Besides the hope of finding a cure, Norman, and Dee hope that researchers will discover ways to detect ALS early and provide treatments to improve quality and length of life with the disease. “I have a lot of hope,” Norman shared.
John Robinson from Parish, FL, a member of the board of trustees of the ALS Association and retired military veteran of nearly 32 years, was diagnosed with ALS in 2019. ALS not only affects the person with the disease but also their family caregivers. Both he and his wife can no longer serve their communities in the same way because of ALS. “The loss to society of their skills and humanity leaves holes never filled the same way again.”
Sunny Brous, a Texan with ALS, joined the call to share her perspective. Sunny was diagnosed with ALS in 2015 at the young age of 27. For Sunny, access to experimental treatments go beyond extending her own life. “Expanded access is how I can contribute to finding a cure for ALS. It takes my love for others and makes it a quantifiable action combining research and science and my dedication to the greatest good of people living with ALS.”
Sandy Morris, from Truckee, CA played a recorded message. She tearfully shared how many of her friends with ALS died waiting for access to life saving drug treatments. “Think about how much better it would be if we were able to die trying rather than die waiting,” she shared, urging the FDA to consider how their delays harm those living with ALS. “It’s not within my power to save my life—it’s within yours.”
Troy Fields from Champa Bay, FL was diagnosed with ALS in 2018. He noted how the considerations of benefits versus risk should be put in the hands of those living with ALS. “Because unless it is your own life on the line, you simply do not get it.”
Cari Meystrik from Nashville Tennessee was diagnosed with ALS in 1998 when she was only 28 years old. She has watched hundreds of friends die from this awful disease. “Would I jump to try a drug that might help me live longer of a disease that I am dying from if it has already proven to be sage and well tolerated but isn’t approved yet? Absolutely. Give me that chance.”
Jay Quinlan from New Orleans joined with his wife and caregiver Stephanie. “You have shown through your recent handling approvals for COVID vaccines that flexibility and expediting processes are possible.” He asked the FDA to use the same urgency when it comes to approving drug treatments for those living with ALS.
Tommy May from Pine Bluff, AR was diagnosed with ALS in 2005. Due to slow progressions, he was both unable to participate in clinical tries and frustrated with the lack of access to treatments. He discussed how those living with ALS are desperate for HOPE on their path. “We are not interested in the long-term. We are desperate for the here now.”
Larry Falivena of Apex, NC, has ALS caused by a mutation of the SOD1 gene. The fight for treatment access is not just for himself—it is also for his children. “I’m asking the FDA to help make sure my boys don’t have to worry about ALS.” He shares that even if the opportunity exists for just a small number of patients to have extended time on this earth that they need that chance.