Foundation Background:
The New Hope Research Foundation was founded in 2006 by Jack Keimel and Ellen Kraft, who are parents of two sons with Adult Tay Sachs Disease. They established the foundation out of their frustration with industry’s lack of interest in working on cures for rare diseases, with the interest of academic institutions being focused on more prevalent diseases (e.g., Alzheimer’s Disease, Parkinson’s Disease, etc.), and with many existing charitable organizations only targeting a small portion of their total donations on scientific research for lysosomal storage diseases.  The position of these institutions is quite understandable:   pharmaceutical and biotechnology industries need to consider the financial payback for research activities; academic institutions need to consider the availability of funding; and the existing charities are confronted with day-to-day patient support needs.  Both Jack Keimel and Ellen Kraft have a background in biomedical science and realized that much more could be done through an organization dedicated to the scientific and medical research required to quickly finding a cure for these diseases. 
 

Mission and Charter
The New Hope Research Foundation is a non-profit organization dedicated to:

• Helping find a genetic cure for GM2 gangliosidosis and other lysosomal storage diseases that affect the central nervous system, and
  
  
• Providing hope to patients and their families currently facing the degenerative and debilitating aspects of these diseases.
  
  

To accomplish these goals, the New Hope Research Foundation has been established to coordinate, conduct, and financially support:

• Research on gene therapy and the means for infusing or delivering gene vectors to correct lysosomal enzyme deficiencies of the central nervous system,
  
  
• Clinical studies intended to show safety and efficacy of gene therapy for the central nervous system aspects of lysosomal storage diseases,
  
  
• Regulatory applications required to initiate investigations of clinical studies and the regulatory submissions required to allow patient access to proven therapies, and
  
  
• Education and communication for patients and families on the clinical manifestations and molecular basis of gangliosidosis and related diseases, on the mechanism of gene therapy, and on the status of related research and clinical studies.
  
  

Follow the links for downloads of the New Hope Research Foundation policies and financial accounting.