BIOPONTIS ALLIANCE RARE DISEASE FOUNDATION INC
A philanthropic and investment alliance turning science into medicines
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Charcot Marie Tooth Disease - HINT1 Novel Treatment
Charcot Marie Tooth Disease (CMT)is one of the most common inherited rare neurological disorders, affecting more than 250,000 people in the US. (NORD). CMT is a progressive disease that causes varying but severe loss of fine motor skills and disability. CMT affects both voluntary and involuntary muscle and nerve activity. Weakness and muscle atrophy progress over time which require some people to rely on foot or leg braces or other orthopedic devices to maintain mobility.
Treatment consists of orthopedics to provide support, physical therapy to relieve cramping, surgery and pain medication, when indicated. There is no disease-modifying treatment or other method to delay progression. There is no cure. Many require assistance for daily, simple tasks upon progression of the disease.
BioPontis Alliance is partnering the University of Antwerp and with Flanders Institute of Biotechnology (VIB) in Belgium on one of the most common subtypes of neuropathy found in CMT caused by a mutation in a gene called HINT1.
The goal of the project is to develop a therapeutic medicine that can restore the functionality of the mutation in these patients.
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Operations
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BIOPONTIS ALLIANCE RARE DISEASE FOUNDATION INC
Board of directorsas of 11/05/2018
Dr. Erik Tambuyzer
Co-Founder BioPontis, Member, Royal Academy of Flemish Sciences & Arts
Term: 2014 -
Dr. Marlene Haffner
Haffner & Associates
Term: 2014 -
Jean-Jacques Cassiman
Professor Emeritus, KU Leuven
Susan Kahn
Executive Director, National Tay-Sachs & Allied Diseases Association
Howard Liebman
Partner, Jones Day, Brussels, BE
Christian Policard
- Founding member and Senior Partner, Biotech Développment Conseils
Warren Strittmatter
Retired, Professor and Chief Division of Neurology, Department of Medicine at Duke University School of Medicine
David Spencer
former BioPontis Chief Scientific Officer, frmr COO/SVO Proteovec