Birth Defects Grants

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

For the last year and a half of Spencer’s life, over 8 months were spent in the hospital. Through the generosity of friends, relatives and strangers, Spencer’s parents received snacks, books, cards, and meals to help during a very stressful situation. During Fall 2001 at Glennon, the Kults became friends with other families that were coping with extended hospital stays: one teenager waited over 3 months for a heart transplant and another family was dealing with an extended pleural effusion. If Chris and Tina were exposed to several families at one small Midwest hospital, just imagine the hundreds of other families around the country experiencing extended or far from home hospital stays, and the financial difficulties they have to face.

With Spencer’s passing, The Kults and the Congenital Heart Information Network wanted to honor his memory in some way that would help other families who might be faced with financial difficulties. In an effort to reach out to these families, C.H.I.N. is now pleased to announce the creation of Spencer’s Fund, a family assistance program that will help families with financial expenses incurred during extended or far from home clinic appointments and hospital stays. Spencer’s Fund will provide groceries, meals, travel subsidies, lodging assistance, and utility payments to families in need.

The Spencer Kult Memorial Family Assistance Fund (Spencer’s Fund) is available to all members of C.H.I.N.

Who is eligible to make a request?
Spencer’s Fund will honor requests from members directly, requests from members on behalf of other members, and requests from friends and families on behalf of members. We encourage local members to make requests for families experiencing difficult hospitalizations on their behalf. We have all made incredible connections in our "global waiting room" and Spencer’s Fund would like to reach out and help during those stressful times.

Requests can be made at any time by emailing SpencersFund@tchin.org or via fax at 314-416-0449. C.H.I.N. membership will be verified before a gift request from Spencer’s Fund is fulfilled.

Requests for Proposal & Grant Applications
The Foundation strives to stimulate and support research on all aspects of Sturge-Weber syndrome, Klippel-Trenaunay, and Port Wine Stain related conditions including, but not restricted to:
studies of the gene expression of SWS
angiogenesis, neurogenesis
insulin growth factors
neuroendocrinology
neuropsychiatric and behavioral issues
glucose metabolism and cerebral blood flow
clinical issues relevant to individuals with SWS
neurobiology studies that are innovative and pursue new avenues of investigation related to all aspects of Sturge-Weber and Port Wine Stains
glaucoma and blood flow studies investigations targeting the adult SWS population
neuroimaging studies
The Sturge-Weber Foundation (The SWF) invites proposals for Young Investigator Awards and Pilot Research Studies in the USA and abroad that focus on projects related to the pathogenesis or treatment of Sturge-Weber syndrome (SWS), Klippel-Trenaunay (KT) or Port Wine Stain birthmarks.

Young Investigator Awards: up to $30,000 per year for maximum of two years in postdoctoral fellowship support (salary stipend and conference allowance) to encourage the brightest young minds to enter the field. Applicants must be no more than four years out of M.D. or Ph.D. program and work under the supervision of an established mentor.

Pilot Research Studies: up to $30,000 per year for maximum of two years for innovative studies with the potential for continued support from federal or other agencies. These awards are available to investigators at any stage in their career.

Applicants from accredited medical schools and universities will be considered. The award will be made to the institution where the investigator will conduct his/her work and will not pay indirect costs.
Conditions of Appointment
Awards will be recommended by the SWF Professional Advisory Board Grants Committee and formally approved by the Board of Directors. American and foreign applicants will be reviewed based on the knowledge about the research being conducted at the sponsoring institution. All research by an applicant is to be under the supervision of a qualified investigator designated by the sponsoring institution. The sponsoring institution must agree to supply adequate clinical and laboratory facilities. The application must describe the equipment and supplies available to carry out the investigation.

A semiannual progress report is to be submitted to the SWF Scientific Advisory Board (mail to the Sturge-Weber Foundation office). This report must outline the results of the research in accordance with expected time of work. A final report is required at the end of the grant period.

All published papers resulting from research performed by a Fellow or Grantee must contain acknowledgment to the Sturge-Weber Foundation and one copy of any published report must be sent to the SWF office.

The SWF Proposal and Application Instructions
Proposals for a fellowship or research grant should be prefaced by a letter of intent summarizing the proposed project and anticipated amount of funding due by September 1 by 5 pm EST. Selected investigators will be invited by October 1 to submit a formal proposal. The proposal and application deadline is December 1. The final selections will be made by the SWF Scientific Advisory Board. Award notification and announcement will be sent within 3 months following the submission deadline.

Awards may be renewed for an additional year on a competitive basis. Proposals involving human subjects must indicate any potential risks (physical or psychological) which are anticipated. Copies of the consent form and documentation of approval from the sponsoring institutional committee on human investigation should accompany the application.

Research grant proposals should follow the same format as that for an NIH R01 using PHS form 398, and instructions for the modular format. The research plan is limited to 10 pages (rather than 25 in the NIH directions). The forms and instructions can be found at the following website: http://grants.nih.gov/grants/funding/phs398/phs398.html

Post-doctoral fellowships should follow the same format as that for an NIH fellowship. The forms and instructions can be found at the following website: http://grants.nih.gov/grants/funding/416/phs416.htm

A letter from an official of the sponsoring institution must accompany the grant proposal endorsing the project and committing adequate facilities will be available to conduct the research proposed. Please note that we do not provide any indirect costs to the institution.
Letters of Intent and Accepted Proposals
Should be Sent to:
THE STURGE-WEBER FOUNDATION
Research Program
PO Box 418
Mt. Freedom , NJ 07970-0418 USA
800-627-5482/973-895-4445
fax: 973-895-4846
e-mail: swf@sturge-weber.com