About Us

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.

1998
- Established the Kessenich Family ALS Clinic, in partnership with the Muscular Dystrophy Association (MDA).
2005
- Relocated the clinic to off-site location (St. Catherine’s Rehabilitation Hospital).
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.
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).
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.
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).
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).
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).
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.

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Research Holds the Key

Comprehensive research is the pathway to understand and eventually cure this complex disease.

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Recently Diagnosed? We Can Help.

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Our Team

The Center’s patient services are led by Volkan Granit, MD, MSc (Medical Director of the ALS Clinic) and Ginna Gonzalez, DNP (Advanced Practice Director).

The Center’s research is led by Dr. Benatar and Joanne Wuu, ScM (Associate Director of Research).

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

Volkan Granit, MSc, MD

Assistant Professor of Neurology

Medical Director

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

Matt Caraher, DPT

Physical Therapist

Kessenich Family Clinic, ALS Center

Amanda Demane, MA, CCC-SLP

Speech Language Pathologist

Kessenich Family Clinic, ALS Center

Lorena Otiniano, MSW

Social Worker

Kessenich Family Clinic, ALS Center

Barbara Simmonds, Ph. D

Psychologist

Kessenich Family Clinic, ALS Center

Roberto Fernandez

Clinical Administrative Assistant

Digna Cossio

Senior Clinical Administrative Assistant

Alfonso Trujillo

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

Volkan Granit, MSc, MD

Assistant Professor of Neurology

Medical Director

Kessenich Family Clinic, 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

Joaquin del Cueto, BA

Project Manager

Research Support Administrator

Alondra Andino-Flores, BS

Research Support Administrator

Maria Catalina Fernandez, MD

Clinical Research Coordinator

Jessica P Hernandez, MD, CCRP

Clinical Research Coordinator

Danielle S. Colato, BS

Clinical Research Coordinator

Katja McBane, BA

Clinical Research Coordinator

Regla Saldana, MPH

Clinical Research Coordinator

Kyra Johnson, BA

Clinical Research Associate

Lilyveth Mesa, BS

Clinical Research Associate

Alexandra Orr, MPH

Clinical Research Associate

Katrina Nguyen, BS

Clinical Research Associate

Yindi Li, MSPH

Research Analyst / Statistical Programmer

Qingchen Lyu, MSc

Research Analyst / Statistical Programmer

Caroline McHutchison, PhD

Post-Doc Fellow

Christine Stanislaw, MS, CGC

Genetic Counselor

Jaya Batra

Student Research Assistant

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

Monica Quesada

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.