Dr. Kendra J. Bjoraker is a pediatric neuropsychologist with specialized training and expertise in rare genetic and neurodegenerative diseases. She completed graduate work at The Kennedy Krieger Institute – The Johns Hopkins University School of Medicine and the University of Minnesota. She served as faculty at University of Minnesota and at the University of Colorado-Denver/Children’s Hospital Colorado. She participated in the neurometabolic, neurogenetic and neuromuscular clinic care teams.

Dr. Bjoraker was also an advisory member for Children’s Hospital Colorado Family Centered Medical Home and co-chair of clinical research for the Neuroscience Institute. She is a licensed psychologist in Minnesota and Colorado and continues to be recognized as nationally certified school psychologist. She sits on the board of medical directors for PACER, a nonprofit organization serving children and young adults with disabilities. 

Dr. Bjoraker is known nationally and internationally for her expertise in lysosomal storage diseases and other rare inherited metabolic disorders. She has been involved in multi-disciplinary research projects investigating the factors that predict and contribute to the neuropsychological, neurobehavioral and health outcomes in individuals with these diseases. She is a presenter, researcher and consultant with extended publications in rare genetic diseases and experience in clinical trial development.  

Dr. Bjoraker began her own consulting business called 3:1 Neuropsychology Consultants, PLLC in Minneapolis, Minnesota in 2013 continuing her passion for sharing and interacting with patients and families through talks and seminars. Her mission is to disseminate information for disease awareness and quality of life, consult on medical and educational issues, present at conferences, seminars and family meetings, consult on neurocognitive and neurobehavioral particularly how to measure outcomes for natural history studies and clinical trials. Dr. Bjoraker is developing a measure using data from Individualized Education Programs for the purpose of documenting rate or change in development to be used in clinical trials and natural history studies.  

Dr. Bjoraker’s areas of expertise are in the following: 

Lysosomal Diseases  

  • Alpha-Mannosidosis  
  • Aspartylglucosaminuria 
  • Batten disease (Neuronal Ceroid Lipofuscinoses)  
  • Beta-Mannosidosis  
  • Cholesteryl Ester storage disease  
  • Cystinosis  
  • Danon disease  
  • Fabry disease  
  • Barber disease  
  • Fucosidosis  
  • Galactosialidosis  
  • Gaucher disease  
  • Gangliosidosis  
  • Globoid Cell Leukodsytrophy or Krabbe disease 
  • Metachromatic leukodystrophy  
  • Mucopolysaccharidoses disorders  
  • MPS I – Hurler syndrome  
  • MPS II – Hunter syndrome  
  • MPS III – Sanfilippo (A, B, C, D)  
  • MPS IV – Morquio syndrome (A & B)  
  • MPS VI – Maroteaux-Lamy syndrome  
  • MPS VII – Sly syndrome
  • Mucolipidosis Type I (Sialidosis)  
  • Mucolipidosis Type II (I-Cell disease)  
  • Mucolipidosis Type III (Pseudo-Hurler polydystrophy)  
  • Mucolipidosis Type IV  
  • Multiple Sulfatase Deficiency  
  • Niemann-Pick Types A & B  
  • Pompe disease (Glycogen Storage disease)  
  • Sandhoff disease  
  • Schindler disease  
  • Tay-Sachs disease  
  • Wolman disease 

Leukodystrophies  

  • Adrenokeukodystrophy (ALD) 

Phenylketonuria (PKU)  

Neurodevelopmental disorders  

Neuromuscular Disorders  

  • Duchenne muscular dystrophy (DMD)  
  • Becker muscular dystrophy (BMD)  
  • Spinal muscular atrophy (SMA)  
  • Limb-girdle muscular dystrophy  
  • Pompe disease  
  • Charcot-Marie-Tooth disease (CMT)/Hereditary Motor Sensory Neuropathy  
  • Congenital muscular dystrophy  
  • Facioscapulohumeral dystrophy  
  • Friedreich’s Ataxia  
  • Myotonic dystrophy 

Nonketotic Hyperglycinemia (NKH) 

Urea Cycle Disorders 

Melissa Hogan writes and speaks on issues affecting the rare disease community and is considered a leading expert on clinical trials for neurodegenerative diseases. She has consulted on the design of clinical trials for rare diseases around the world. 

After her youngest son was diagnosed with the rare disease Hunter Syndrome (Mucopolysaccharidosis II) in 2009, she left her career as a corporate lawyer and strategy consultant to focus on advancing awareness, education, and research in the Hunter Syndrome community. She co-founded, and until 2019, served as the President of Project Alive, growing it into a multi-million-dollar Hunter Syndrome research and advocacy foundation.  

For many years, she wrote a blog that grew to be read in over 100 countries, and has spoken at industry and advocacy conferences, as well as FDA, NIH, and international panels. She now serves as an FDA Patient Representative, a member of the FDA/CTTI Patient Engagement Collaborative, an advisory board member for the Mayo Clinic Social Media Network, and on the Corporate and Foundation Alliances for Global Genes.  

Under her leadership, Project Alive initiated and funded a gene therapy research program and launched award-winning fundraising campaigns, including viral videos, a documentary series, and even an original song she wrote called “Alive.” Hogan also writes about cutting-edge issues, with her second book being written on pediatric medical trauma. She also writes at melissajhogan.com.  

Hogan holds a J.D. with honors and an emphasis in health law from the University of Pittsburgh School of Law, and a B.A. with honors in Communications and Political Science from Georgetown College. Prior to her son’s life-changing diagnosis, her law career included serving as a clerk on the U.S. Court of Appeals for the Sixth Circuit, a corporate and securities attorney, a professor of legal writing and health care regulatory law, and a management consultant. 

She has received multiple awards for her work including Rare Champion of Hope in Advocacy from Global Genes (2018), Distinguished Alumni from Georgetown College (2018), Directors’ Award from the National MPS Society (2014), and a Telly Award for Best Online Commercial, Nonprofit (2015). 

She lives outside Nashville, Tennessee with her three sons, where she enjoys writing, playing guitar, and hiking. 

Specializing in: 

  • Rare and neurodegenerative disorders 
  • Outcome measure development, improvement, and implementation 
  • Engagement with FDA 
  • Clinical trial design 
  • Neurocognitive testing 
  • Patient registries 
  • Patient advocacy