Providing new hope to families facing the
debilitating aspects of lysosomal storage diseases.
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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,


  • 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