Research

Galactosemia Foundation Has Awarded a 4th round of Research Grants totaling $142,453

Galactosemia Foundation received six strong proposals for Round 4 of our research grant program. Each proposal was reviewed by the research team lead to ensure it included all required information prior to being officially accepted. Fourteen peer reviewers were recruited and two were assigned to each proposal by the research team lead. Each peer reviewer reviewed one proposal using Galactosemia Foundation proposal guidelines and a provided scoring rubric. In parallel, the research team members each reviewed all proposals and evaluated their usefulness to the Galactosemia Foundation community and their plan for sharing any information generated by the research or study. The four grants that Galactosemia Foundation funded in round 4 are:

Each of the research grants have been awarded for a duration of one year. Each of the research grant recipients will be asked to write an interim “lay” summary of their research after six months, which will be included in a future Galactosemia Foundation newsletter and posted on the Galactosemia Foundation Research Web page. In addition, each research group will write a final report at the completion of their grant and these reports will be posted on the GF Research web page. In addition, we have asked the lead of each of the research groups to consider presenting the results of their work at the 2014 Galactosemia Foundation conference in Orlando. 

About the Galactosemia Foundation Research Team

The Galactosemia Foundation Research Team was established to manage a grant program to distribute GF Research Funds to support a broad range of research to lead to improvements in the lives of people with Galactosemia. This grants program provides support to practitioners conducting medical and scientific research involving the metabolic disorder Galactosemia. Research funded by this grant program shall include, but not be limited to research about galactosemia involving nutrition, diet, speech, physical and occupational therapy, premature ovarian failure, and other research. Eligible Projects include research studies, clinical projects, educational projects, or collaborative meetings.

Future grant rounds will be announced as we continue to search for promising treatments and a cure for Galactosemia. In 2011 we teamed with Dr. Gerard Berry and Dr. Susan Waisbren of Boston Children’s Hospital in an innovative proposal requesting a $500,000 grant from the National Institute of Health. While the proposal was not selected for funding, the Galactosemia Foundation welcomes future opportunities to partner in larger scale research proposals. The research team will work tirelessly to ensure that Research Fund Donations are wisely invested.

Research Team Members

  • Dan Lambert, Chair, research@galactosemia.org
  • Jo Beth Southard
  • Christy Johnson
  • Alison Clark
  • Denise Wilburn
  • Kristine Saylor
  • Brian Mannix
  • Beatrice Ortega
  • Christine Winey
  • Kayla Costner

Ongoing Research

Improved Intervention for Galactosemia

Research by Dr. Judith Fridovich-Keil, Department of Human Genetics, Emory University School of Medicine

Dr. Fridovich-Keil, recipient of the Research Team's first Research Grant, is the principal investigator for this project searching for a potential drug for people with galactosemia

Email Dr. Fridovich-Keil - Read More about Dr. Fridovich-Keil (PDF)

Reference Growth Curves Research Study for Patients with Classic Galactosemia

Growth charts flyer

Research study by Jenny Howell with Dr. Wierenga from the University of Oklahoma Health Sciences Center

Growth monitoring is an important clinical aspect for any patient and its assessment is the most useful tool for defining the health and nutritional status of both individuals and the population. Individuals with CG, their families, and professionals who manage them will benefit from the development of normal growth curves, because they can provide better knowledge of the normal growth and development of the child with this disease. These growth curves will provide clinicians with a good reference for the normal growth of individuals with classic galactosemia.

Email Jenny Howell - Read more about the Growth Charts research study (PDF)

Galactosemia Foundation Research Fund and Grant Program

Research Funded To Date

Four rounds of grants have been awarded to date, in 2007, 2009, 2010, and 2013. The table below summarizes the funded research team, research topic and financial award to each of the six research teams. More information about the grants can be found by clicking on the link for the grant recipient below.

Year Of Award Principal Investigator Short Title Of Research Grant Grant
2007 Dr. Judith Fridovich-Keil Toward Improved Intervention For Galactosemia $50,000
2009 Susan Waisbren Galactosemia: Review of Outcomes and Development of Guidelines for Management of Educational and Behavioral Challenges $29,919
2009 Gerard Berry Health and Psychosocial Outcomes in Adults with Classic Galactosemia $30,000
2010 Sandy van Calcar Evaluation of Nutrition Reccomendations for Classic Galactosemia $27,000
2010 Susan Waisbren The Brain and Neuro-functioning in Adults with Galactosemia $34,997
2010 Anna Marabotti Computational Biology Strategy for the Development of Potential Drugs for People with Classical Galactosemia $41,500
2013 Dr. Gerard Berry Modifier Genes and Epigenetic Effects in Galactosemia $48,800
2013 Dr. Judith Fridovich-Keil Toward improved long-term outcome in classic Galactosemia $40,361
2013 Dr. Kent Lai Characterization of a New Mammalian Animal Model of Classic Galactosemia $33,000
2013 Dr. Sandra van Calcar Nutrition Management of Classic Galactosemia $20,292

Research Fund

Over $450,000 has been donated to the GF Research Fund. The GF Research fund has a balance of approximately $35,000 as of August 11, 2013.

We accept donations online at our DONATE NOW! page, or by mailing your donation to:

  • Galactosemia Foundation
    Research Fund
    P.O. Box 2401
    Mandeville, LA 70470-2401

Galactosemia Foundation Grant Program

Galactosemia Foundation encourages and funds research that will increase our understanding of Galactosemia and/or help families living with Galactosemia.  Galactosemia Foundation is not currently accepting applications for research grants at this time.  We periodically request proposals, typically every couple of years - depending on the balance of our research fund.

Please refer to the Galactosemia Foundation Research Program Policies and Procedures document for specific details of the proposal process.

Frequently Asked Questions

Question 1: What is an Eligible Project?

The Galactosemia Foundation intends to fund a broad range of research, both scientific and medical, involving the metabolic condition Galactosemia, with the ultimate goal of improving the lives of people with Galactosemia. Research funded by this grant program may include, but will not be limited to, questions involving genetics, nutrition, diet, speech, physical and occupational therapy, and premature ovarian failure. Four kinds of project designs will be considered eligible for the grants program: a research study, a clinical project, an educational project, or a collaborative meeting.

A. Research Project:
A research project is one that asks a research question that is answered through rigorous systematic methods. These projects may include but will not be limited to investigations of measurable outcomes in Galactosemia care, epidemiology of Galactosemia, and analyses of aspects of Galactosemia care.

B. Clinical Project:
A clinical project seeks to improve Galactosemia care through the development of tools that may augment the delivery of that care. Examples of this may include but will not be limited to the development of clinical pathways and creation of measurement tools (e.g., to assess quality of life).

C. Educational Project:
An educational project is one that designs or implements relevant educational programs, develops educational materials, or develops innovative educational tools for patients and the community.

D. Collaborative Meetings:
GF recognizes the need for collaboration among professionals and therefore also encourages studies that demonstrate this important quality. The grants program will accept applications to fund collaborative meetings among professionals that may lead to future research projects.

Question 2: What Level of Funding can be anticipated?

Grants have historically been for $50,000 or less, depending upon the scope of the research, clinical, educational, or collaborative project. Future grant amounts will be dependent on the amount of money available in the Galactosemia Foundation research fund.  Research projects must be completed within the time frame selected for the research as stated on the application.

Question 3: Where do I find Application Forms?

Galactosemia Foundation is not currently accepting applications.

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