Who we are

kasey woleben

Bio: Coming soon!


courtney and Jacob boggs

As a Nurse Practitioner in general pediatrics and pediatric endocrinology, Courtney Boggs has an extensive medical background. However, it wasn't until May of 2017 when her daughter, Emma Grace, was diagnosed with SURF1 Leigh's Syndrome did she first learn about mitochondrial disease.


She has made it her life's mission to raise awareness and funding for this little-known disease that unexpectedly changed her life. 


Professionally, Courtney advocated for children with Type 1 Diabetes. Today, Courtney focuses her efforts and energy as a tireless advocate for mitochondrial  disease.  In 2018, she and her husband, Jacob, joined efforts with another SURF1 family to form the Cure SURF1 Foundation with the mission of advancing research towards a cure.  


The news of her daughter's diagnosis devastated Courtney and her family, but she has the true heart of a fighter and an advocate. Courtney is an inspiring mama on a mission, and her guiding philosophy is lighting the path for those walking beside and behind her: 


“Our lives are not determined by what happens to us, but how we react to what happens; not by what what life brings to us, but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events, and outcomes. It is a catalyst...a spark that creates extraordinary results.”


sophia zilber
board member

Sophia has been working for over 15 years in the pharmaceutical industry and is currently working in Pfizer as a Statistical Programming Lead in Rare Disease Research Unit. Sophia’s newborn daughter Miriam died from Leigh Syndrome, a form of the Mitochondrial Disease, in 2017.


Following this tragic event, Sophia volunteered a lot of her time and personal and professional experience to help rare disease community.


Her efforts included patient registry data analysis, raising awareness among patients and patient advocacy groups regarding best practices for data collection, as well using patient registry responses to give voice to the patients and caregivers.


Sophia currently serves on the PHUSE Industry Standards Committee, developing educational materials for early career data scientists new to CDISC standards.


Sophia also shared her personal experiences through blog posts and articles published in American Academy of Pediatrics Palliative Care Newsletter, KevinMD blog, Courageous Parents Network, and Global Genes. Sophia serves on the boards of Rare New England, New England Regional Genetics Group, Cure MITO, and on the Scientific Advisory board of Rare-X.

One of the quotes that inspires her on this mission is:

"act as if what you do makes a difference. it does." 

scientific and medical advisory board member

Dr. Saima Kayani is a Child Neurologist with additional training in Medical Genetics. Her advanced training helps her better understand the clinical and basic molecular mechanisms of neurogenetic diseases. She is board certified in pediatrics and neurology. Throughout her fellowships at UT Southwestern, she worked seeing complex patients in Child Neurology and Medical Genetics and the Rare Brain Disorders Clinic at Children’s Medical Center.


Dr. steven gray
scientific and medical advisory board member

Dr. Steven Gray earned his Ph.D. in molecular biology from Vanderbilt University in 2006, after receiving a B.S. degree with honors from Auburn University. He performed a postdoctoral fellowship focusing on gene therapy in the laboratory of Jude Samulski at UNC Chapel Hill. He is currently an Associate Professor in the Department of Pediatrics at the University of Texas Southwestern Medical Center.


Dr. Berge Menassian
scientific and medical advisory board member

Pediatric neurologist Dr. Berge Minassian has special expertise in caring for patients with epilepsy, neurodegenerative diseases, and neurogenetic conditions.  A physician-scientist, Dr. Minassian has spent much of his 20 years of research seeking the underlying genetic causes of epilepsy. He works closely with Children's Medical Center Research Institute at UT Southwestern.

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Dr. qinglan ling
scientific and medical advisory board member

Dr. Qinglan Ling has a keen interest in using cutting-edge genetic tools to develop treatment strategies for human diseases. Dr. Ling earned her Ph.D. in pharmacology from the University of Houston in 2018. During her Ph.D. study, she published three peer-reviewed papers as the first author and received a Future Faculty Fellowship in 2015. She is currently a postdoctoral researcher in the laboratory of Dr. Steven Gray at the University of Texas Southwestern Medical Center. As a postdoc, she has been leading preclinical studies to establish an AAV-based gene therapy strategy for SURF1-related Leigh syndrome, a rare and devastating disease with no current treatment options. As this work moves into clinical trials, Dr. Ling’s future research endeavors include developing novel gene therapy strategies for mitochondrial diseases and other neurodegenerative diseases using mitochondria as a target.

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Kevin W Freiert, MBA
patient registry advisor

Kevin is a seasoned drug developer with outstanding people skills. During his 30-year career with Pfizer, Kevin held many varied roles that have given him a broad and deep understanding of the Drug Discovery and Development Process.

Kevin has a passion for helping people see the “bigger picture” so that they can achieve their most important goals. Much of his career was spent teaching other colleagues and stakeholders how R&D works. In 1998, he and a colleague established Pfizer Research University (PRU) which helped expert drug researchers and developers to teach what they knew. He later led several development teams as Project Manager, including a few rare disease projects. Kevin retired as the head of the Portfolio and Project Management Operations Excellence Group.

After retiring from Pfizer, Kevin started Salem Oaks®. Salem Oaks’ purpose is to empower patients to shape the future of medicine® by providing educational programs about Drug Discovery and Development. They work with patient organizations and disease foundations to develop educational tools and programs that they can offer to their communities. The goal is to help the non-profits build capacity. Salem Oaks’ primary focus is helping people learn the inside story of how drugs are discovered and developed. They do this through online and live courses and through their two podcasts.

Kevin is also the host of the Improbable Developments and Raising Rare podcasts.

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Dr. joana matos
patient registry advisor

Dr Joana Matos has been working in the biomedical field for more than 15 years. She earned her Ph.D. in Medicine (Physiology) from Aarhus University, Denmark, in 2005, after receiving a B.S. degree in Microbiology and Genetics from the University of Lisbon, Portugal. She worked in academia most of her career, and she has been working as a Health Outcomes researcher for the past 5 years. 

Joana's career path was initially motivated by a passion for Rare Disease. She wanted to understand more so that she could eventually be able to contribute to a field that has such significant knowledge gaps, which are essential in the search for new therapeutics. 


Joana is now volunteering some of her time, as well as her personal experience and professional expertise, to help the Rare Disease community in their search for knowledge and answers. 

One of the quotes that inspires Joana on this mission is:

"We can't always choose the music life plays for us, but we can choose how we dance to it."