Developmental Disabilities Grants

Medical Research Grants and Postdoctoral Fellowships Offered for Studies Aimed at Treatment of Fragile X

INTRODUCTION

The FRAXA Research Foundation offers a grants and fellowships program designed to encourage research aimed at finding a specific treatment for fragile X syndrome.

Fellowships of up to $40,000 per year will be offered to support postdoctoral fellows who want to pursue research in fragile X (salary plus fringe benefits and/or travel to meetings).
FRAXA also invites investigator-initiated research applications for innovative pilot studies aimed at developing and characterizing new therapeutic approaches for the treatment and ultimate cure of fragile X syndrome. There is no funding limit to this category of grant, but typical funding levels are $30K - 60K.
FRAXA is particularly interested in preclinical studies of potential pharmaceutical and genetic treatments and studies aimed at understanding the function of the FMR1 gene. New applications are accepted each year on February 1. If February 1 falls on a Saturday or Sunday, the deadline will be the following Monday.

Fellowships and grants are generally awarded for a period of one year. Based on reasonable progress during that year, awards may be renewable for a second year. Renewal applications are due on February 1, at least three months before the second year of funding is needed. If February 1 falls on a Saturday or Sunday, the deadline will be the following Monday.

PURPOSE OF GRANTS/FELLOWSHIPS

The purpose of this grant program is to promote research aimed at finding a specific treatment for fragile X syndrome. FRAXA's goal is to bring practical treatment into current medical practice as quickly as possible; therefore, preference will be given to research projects that have a clear practical application and the results of which will be shared with other qualified researchers in a timely fashion.

ELIGIBILITY FOR GRANTS/FELLOWSHIPS

Institutions receiving grants must be recognized as nonprofit. In the US, this means that institutions are exempt from federal income taxes. Preference is given to institutions within the United States.

Individuals nominated by applicant institutions for the postdoctoral fellowship should have training and experience at least equal to the Ph.D. or M.D. Level. Preference is given to United States citizens.

ACCEPTABLE COSTS

Acceptible costs covered by FRAXA postdoctoral fellowships and investigator-initiated awards are limited to:

Postdoctoral salary
Fringe benefits
A budget for consumable supplies
FRAXA reserves the right to cover any item if explicitly authorized by FRAXA's Board of Directors. However, FRAXA is unable to pay for indirect costs under any circumstances.

Fellowships and grants are awarded for the period of one year and may be renewed for a second year, based on satisfactory progress. A financial report and progress report are required at the end of each year.

AMENDMENT OF POLICIES

The FRAXA Research Foundation reserves the right to modify its policies governing grants at any time. The grantee agrees to abide by any changes or to terminate the grant at the time when such changes become effective. Failure to abide by the policies governing grants shall be considered sufficient grounds for cancellation of a grant or refusal to consider any pending application by the grantee.

PROHIBITION OF DISCRIMINATION

No person shall be excluded from participation in or denied the benefits of any program or activity receiving financial assistance from FRAXA because of race, ethnic origin, religion, sex, or sexual orientation.

HUMAN AND ANIMAL SUBJECTS

Human subjects studied in the course of research conducted under a grant are under no circumstances a responsibility of FRAXA. Human subjects in a program supported by FRAXA shall be volunteers in any survey, study or procedure. Research involving human subjects must have Institutional Review Board approval.

If animals are used in the proposed study, written certification must be provided to FRAXA indicating that proper treatment, care, and humane conditions have been provided. Research involving animal subjects must have Institutional Animal Care and Use Committee approval.

OBLIGATIONS OF THE GRANTEE

In accepting a grant, the applying institution undertakes that at its conclusion it will

Submit promptly to FRAXA a complete final report on the work pursued.
On awards of more than one year duration, a yearly report will be expected.
Supply an accounting of funds received from FRAXA and expenditures made in such detail and in such manner as may meet Internal Revenue Service procedures.
Recognize the support of FRAXA in any published article resulting from the work pursued with a credit line reading "Supported in part by a grant from the FRAXA Research Foundation"
Recognize the support of FRAXA in any presentation of the at professional meetings and conferences.

PUBLICATION AND DISSEMINATION OF RESULTS

FRAXA's purpose in providing grants is to speed up progress towards treatment for fragile X. Therefore, in accepting an award, the Principal Investigator undertakes to publish the results of the work pursued in the primary literature, in a timely fashion. Once published, the reagents, methods, materials, and products of the work must be made available to other qualified researchers. FRAXA reserves the right to share in any proceeds from an invention or discovery developed under this grant, including licensing fees and patent rights.

PUBLICITY ON WORK UNDER GRANT

The grantee institution and Principal Investigator will cooperate fully with FRAXA in announcement through the news media of grants awarded and in materials prepared to publicize work under the grant. FRAXA will publish periodic descriptions and updates on funded projects in its quarterly members' newsletter.

APPLICATION PROCESS

Potential applicants are encouraged to submit a brief letter of inquiry describing the proposed project before writing a full application. No specific application format is required, but an NIH R01 proposal is acceptable.

Please provide the following information with your application:

Description of the proposed project (6-12 pages recommended)
Curriculum Vitae for the Principal Investigator
Curriculum Vitae for the Postdoctoral Fellow to be supported under the grant
Names of 3 references who are willing to be contacted to provide recommendations for candidate postdoctoral fellow (not necessary for principal investigators)
Financial accounting of how the funds will be spent, with dollar distribution into major component items
A full accounting of any other current and submitted sources of support for this project and other lab research
Requested start date of the project. The earliest possible start date is 3 months after receipt of the application; applicants will be notified of awards in 2 months.
Send one complete copy of the application by email to fraxa@comcast.net, as an attached file in Acrobat PDF format. Alternately, this electronic copy may be sent to the address below on a CD. Also please send one copy of the application to:

Michael Tranfaglia, MD
Medical Director
FRAXA Research Foundation
45 Pleasant St. Second Floor
Newburyport, MA 01950

Applications must be postmarked by the deadline date.

RENEWALS

FRAXA grants are awarded for a single year and are generally renewable, based on good progress being made the first year. We require a renewal application be submitted by FRAXA's regular deadline (February 1). The renewal application should consist of a detailed progress report for the first year and work plan for the second year, as well as a financial report of how first year funds were spent.

For further information contact Michael Tranfaglia at FRAXA
Phone (978) 462-1866
Fax: (978) 463-9985

The Robert Guthrie PKU Scholarship
In memory of Dr. Robert Guthrie, this higher education scholarship program was started after his death in June 1995 by National PKU News. Dr. Guthrie developed the newborn screening test for phenylketonuria (PKU) in 1961. He then worked tirelessly for more than thirty years to establish newborn screening programs in the United States and many other countries. Every family of a child with PKU born after the mid-1960's, in a country where newborn screening is done, has reaped the benefits: more than 20,000 children have been saved from devastating mental retardation caused by untreated PKU. Early screening and a special diet have allowed these young people to grow up normally and lead full, productive lives.

There is no question that young people with PKU who are bound for higher education programs owe this opportunity to early screening and diet treatment. Without PKU identification early in life, they could be living in institutions or group homes for the retarded instead of planning to attend college or technical school. It seemed fitting to establish a scholarship program in Dr. Guthrie's name. The scholarship will benefit bright young people with PKU who are planning to obtain higher education degrees through college or technical school.

From its start in 1989, Dr. Guthrie was a member of the Board of Directors of National PKU News. National PKU News is a nonprofit organization devoted to bringing news and other information to families living with PKU. Beyond his single-minded dedication to preventing the mental retardation caused by PKU, throughout his life Dr. Guthrie was a devoted advocate for families living with it. National PKU News was started with his strong support and encouragement.

We hope families, and others whose lives have been touched by Dr. Guthrie's remarkable career, will generously support The Robert Guthrie PKU Scholarship.

Who is eligible:

Scholarships are open to any college-age young person with PKU who is on the diet. Residents of any country are eligible to apply.

Applicants must be accepted to an accredited college or technical school before the scholarship is awarded, but may apply for the scholarship before acceptance is confirmed.

Who will review scholarship applications:

A scholarship committee will review all applications. The committee consists of well-known PKU professionals and Guthrie family members.

Scholarship awards:

Each year, scholarships will be announced in January. The number of scholarships awarded each year and the amount granted may vary, depending on available funds.

Academic excellence and financial need of the applicant will be among factors considered.

Application deadline:

Applications will be available after August 1 each year for that year's applications.

Completed applications must be received by November 1 each year.

The Robert Guthrie PKU Scholarship
c/o National PKU News
6869 Woodlawn Ave. NE #116
Seattle, WA 98115-5469