Login  |  Register  |  Search

Research Grants


The Butterfly Guild of Seattle Children’s announces funding for its fifth grant program to support research on Shwachman Diamond Syndrome, a genetic bone marrow failure disease.  The Butterfly Guild aims to improve the length and quality of lives of patients diagnosed with Shwachman Diamond Syndrome.  Shwachman Diamond Syndrome is a rare disease that mainly affects the pancreas, bone marrow, and skeleton.  Other organs may also be affected.  Shwachman Diamond Syndrome is the second most common cause of pancreatic insufficiency, Cystic Fibrosis being the most common.  People with Shwachman Diamond Syndrome usually have a decreased ability to digest food because the cells of the pancreas, where enzymes are produced, do not work properly.  In addition, the disease often presents with a decreased number of at least one kind of blood cells, and in some cases a decrease in many kinds of blood cells.  Most often the decrease occurs in the number of neutrophils, the blood cells necessary to fight bacterial infections.  Infants often become ill with symptoms by the age of four to six months old.  Early problems include failure to thrive, feeding problems, and recurrent infections.  Growth often remains below normal with a minority of children showing growth beyond the third percentile.  Infections are present in most cases, which sometimes lead to death.  Patients with Shwachman Diamond Syndrome have a propensity to myelodysplasia or leukemic transformation. 

It is not uncommon for a child with Shwachman Diamond Syndrome to go undiagnosed for months or even years.  Unfortunately, very few physicians recognize Shwachman Diamond Syndrome.  Moreover, few medical centers are equipped to offer the specialized diagnostic, treatment, and research facilities required for the comprehensive management of children with Shwachman Diamond Syndrome. 


The purpose of this RFA is to encourage exploratory/developmental/novel research projects directed toward better treatment and longevity for persons afflicted with Shwachman Diamond Syndrome.  Areas of priority include, but are not limited to:

Research to better diagnose and treat Shwachman Diamond Syndrome patients

    • Research to better diagnose and treat Shwachman Diamond Syndrome patients
    • Research to overall better the life experience of people living with Shwachman Diamond Syndrome
    • Research to find and better drug therapies to combat Shwachman Diamond Syndrome
    • Research to improve treatments for pancreatic insufficiency in Shwachman Diamond patients, and to improve treatment for other gastrointestinal problems
    • Research to improve procedures and success rates for bone marrow transplants involving Shwachman Diamond Syndrome patients
    • Research to find alternative treatments to bone marrow transplants
    • Research to improve overall comfort and quality of life for patients with Shwachman Diamond Syndrome
    • Research to ultimately lead to a cure for Shwachman Diamond Syndrome



Eligibility.  This grant is open to any physician and/or researcher affiliated with Seattle Children’s Research Institute. This grant is also open to any physician and/or researcher affiliated with any Children's Hospital.

Award.  The amount of the award will be determined based on the budget set forth by the applicant and reasoning for such budget.  Awards generally do not exceed U.S. $60,000.  Awards will be issued for a one-year budget period, and cannot be extended or renewed.  All awards will be issued in U.S. Dollars.  Indirect costs will not be provided.

Interim Progress Report.  An interim progress report is required after 6 months of the grant award.  The interim progress report shall include a summary of results obtained and any additional funding received as a result of the research funded by the Butterfly Guild.  The interim progress report shall also include a summary of publications related to the funded project.

Final Progress Report.  A final progress report and final expenditure report are required no later than 2 months after the end of the grant period.  The progress report must discuss the project results and identify publications and any new funding that resulted from this award.  The final progress report shall also include a summary of how the funded project may directly impact the lives of persons living with Shwachman Diamond Syndrome.  Publications and presentations must reference funding from the “Butterfly Guild of Seattle Children’s.”  Awardees will be expected to attend the annual meeting of the Butterfly Guild, typically held in May each year, either in person or by phone, to discuss their results.

Application.  The application form can be found at the Butterfly Guild website, www.butterflyguild.org.  Applicants may also request an Application by emailing such request to butterflyguild@hotmail.com

Review Criteria.  Applications will be reviewed by the Butterfly Guild Board of Directors.  Evaluation criteria will include:

  • Commitment to researching Shwachman Diamond Syndrome
  • Commitment to participating in the quest for a cure and better treatments for persons diagnosed with Shwachman Diamond Syndrome
  • Short-term and long-term goals of the researcher related to the research project
  • Clarity and soundness of objectives/hypotheses, methods, and budget justification
  • Number of publications, exhibitions, performances, writings resulting from previous related research
  • Originality and innovation in concept and/or approach
  • Adherence to the application guidelines  


INQUIRIES:   butterflyguild@hotmail.com

powered by Doodlekit™ Free Website Maker