Our Mission
To provide the highest level of care and multispecialty support for patients and families living with amyotrophic lateral sclerosis (ALS) from the time of diagnosis to the end stages of the disease, while conducting advanced research into the cause and cure of ALS. Our goals are for every patient and family to receive the best possible care, and to contribute to ending ALS through research.
Our History
In 1994, at the age of 55, Mark F. Kessenich, Jr. was diagnosed with ALS. An avid golfer, he bravely told his family that he “would play the ball where it lies.” He had no idea what a “bad lie” it was. Over the next few years, he declined rapidly. He had great respect for his primary treating physician, Dr. Walter Bradley (then the Chair of the Department of Neurology at the University of Miami). However, given that ALS affects multiple aspects of one’s body and function (for example, mobility, breathing, nutrition intake, etc.), he had to visit doctors all over town in order to obtain full scope of care that he needed. Frustrated with the disjointed care he was receiving, he asked Dr. Bradley to help him start a multi-disciplinary ALS Clinic at the University of Miami, to better care for patients and their families. Mr. Kessenich and his friends generously gave the funds to make the clinic a reality – and the Kessenich Family ALS Clinic opened its doors in 1998.
Dr. Benatar joined the University of Miami in late 2010 as the Chief of the Neuromuscular Division and the Executive Director of the ALS Center. In 2013 he relocated the multi-disciplinary clinic from St. Catherine’s Rehabilitation Hospital (where it had been since 2005) back to the University of Miami. At the same time, Dr. Benatar expanded the multi-disciplinary clinic to include a full complement of allied health professionals, and he added research as a core component of every clinic visit.
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1998
- Established the Kessenich Family ALS Clinic, in partnership with the Muscular Dystrophy Association (MDA).
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2005
- Relocated the clinic to off-site location (St. Catherine’s Rehabilitation Hospital).
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2010
- Transferred the Pre-fALS study (which is the first systematic study of individuals at genetic risk for ALS and had been initiated in 2007) to the University of Miami.
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2013
- Relocated the clinic back to University of Miami medical campus.
- Formally added research as a component of multi-disciplinary care.
- Established the novel, first-of-its-kind Second Visit Clinic.
- Designated as a Certified Center of Excellence by the ALS Association (ALSA).
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2014
- Expanded the multi-disciplinary clinic from a half-day to a full-day each week.
- Joined the Bitner-Plante Initiative, established by the state of Florida and the Florida Chapter of ALSA, at its inception.
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2015
- Established the CReATe Consortium, an international alliance of physicians, scientists and patient advocacy groups focused on therapy development for ALS and related disorders.
- Identified the first biofluid biomarker of ALS progression (in collaboration with Dr. Mary-Louise Rogers, Flinders University).
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2016
- Promising results from Arimoclomol phase II clinical trial (initiated and led by Dr. Benatar) serve as foundation for a phase III trial (launched in 2018).
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2017
- Initiated telehealth multi-disciplinary care for patients unable to travel to clinic.
- Identified neurofilament light as the first biofluid biomarker of pre-symptomatic ALS (in collaboration with Dr. Andrea Malaspina, Barts and The London, University of London).
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2018
- Launched The ALS Toolkit in the Epic electronic health record system as a platform for the systematic collection of structured data during a multi-disciplinary clinic visit, with the goal of using these data for quality improvement and research.
Racing for the Cure
Two Decades of Running in Support of ALS Patient Care and Research
Multi-disciplinary Care
Comprehensive care compassionately delivered.
Research Holds the Key
Comprehensive research is the pathway to understand and eventually cure this complex disease.
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Our Team
Clinic Team
Ginna Gonzalez, ARNP, DNP
Advanced Practice Director
Kessenich Family Clinic, ALS Center
Olimpia Carbunar, MD, MS
Assistant Professor of Neurology
Kessenich Family Clinic, ALS Center
Andrew Brown, MD
Assistant Professor of Neurology
Kessenich Family Clinic, ALS Center
Michael Benatar, MBChB, MS, DPhil
Professor of Neurology
Walter Bradley Chair in ALS Research
Executive Director, ALS Center
Nathan Carberry, MD
Assistant Professor of Neurology
Ashok Verma, MD, MBA
Professor of Neurology
Khema Sharma, MD
Professor of Neurology
Walter Bradley, DM, FRCP
Emeritus Professor of Neurology
Founding Director
Kessenich Family Clinic, ALS Center
Adriana Lopez, OT
Occupational Therapist
Kessenich Family Clinic, ALS Center
Maricela Calvo, BSN, RN
Registered Nurse
Kessenich Family Clinic, ALS Center
Lisbet Ascon, BSN, RN
Registered Nurse
Kessenich Family Clinic, ALS Center
Mabel Gonzalez, RN
Registered Nurse
Kessenich Family Clinic, ALS Center
Jaclyn Wohn, DPT
Physical Therapist
Kessenich Family Clinic, ALS Center
Andres Martinez, DPT
Physical Therapist
Kessenich Family Clinic, ALS Center
Jennafer Best, MS, CCC-SLP
Speech Language Pathologist
Kessenich Family Clinic, ALS Center
Arisly Alfonso Reyes, MS, RDN
Dietician
Kessenich Family Clinic, ALS Center
Yolianys Villalobos, LMHC, CAP
Mental Health Counselor
Kessenich Family Clinic, ALS Center
Gioconda Parrales
Medical Assistant
Kessenich Family Clinic, ALS Center
Carla Silva, MA
Medical Assistant
Kessenich Family Clinic, ALS Center
Digna Cossio
Senior Clinical Administrative Assistant
Alfonso Trujillo
Senior Clinical Administrative Assistant
Benatar/ Wuu Research Group
Michael Benatar, MBChB, MS, DPhil
Professor of Neurology
Walter Bradley Chair in ALS Research
Executive Director, ALS Center
Joanne Wuu, ScM
Research Associate Professor of Neurology
Associate Director of Research
ALS Center
Nathan Carberry, MD
Assistant Professor of Neurology
Julie Steele, RN
Neuromuscular Clinical Trials Manager
Anne-Laure Grignon, MSc, MD
CRiALS and Pre-fALS Project Manager
Anne Cooley, BSc, MPH, CCRP
CReATe Project Manager
Alondra Andino-Flores, BS
Research Support Administrator
Maria Catalina Fernandez, MD
Clinical Research Coordinator
Jessica P Hernandez, MD, CCRP
Clinical Research Coordinator
Regla Saldana, MPH
Clinical Research Coordinator
Alexandra Orr, MPH, CCRC
Clinical Research Coordinator
Kyra Johnson, BA
Clinical Research Coordinator
Katrina Nguyen, BS
Clinical Research Coordinator
Enjolie Vadella, MPH
Clinical Research Coordinator
Melanie Hechavarria, MPH
Clinical Research Coordinator
Alejandra Casas, MPH
Clinical Research Coordinator
Max Galarce, BS
Clinical Research Coordinator
Ana Benacerraf, BS
Clinical Research Associate
Lauren Flamenbaum, MS
Clinical Research Associate
Yindi Li, MSPH
Research Analyst / Statistical Programmer
Qingchen Lyu, MSc
Research Analyst / Statistical Programmer
Volkan Granit, MSc, MD
Assistant Professor of Neurology
Medical Director
Kessenich Family Clinic, ALS Center
Caroline McHutchison, PhD
Post-Doc Fellow
Joaquin del Cueto, BA, PMP
Project Manager
Research Support Administrator
Christine Stanislaw, MS, CGC
Genetic Counselor
Julia McDevitt
Student
Ross Bunch
Student
Jake Falbo
Student
Emirose Thatthil
Student
Bradley Research Group
Walter Bradley, DM, FRCP
Emeritus Professor of Neurology
Founding Director
Kessenich Family Clinic, ALS Center
Sharma Research Group
Khema Sharma, MD
Professor of Neurology
Patricia Gonzalez Figueroa
Clinical Research Coordinator
Zeier Research Group
Zane Zeier, PhD
Associate Professor
Melina Ramic, B.S.
PhD Candidate
Matthew Rybin, B.S.
PhD Candidate
Our Partners
We are grateful to our partners who support our clinical services. We also extend our sincere thanks to all of our patients and research participants for their continued support, as well as the many organizations and agencies that have supported our research.