research methods in physical activity

Shwachman-Diamond America awards grants up to $10,000 for Shwachman-Diamond Syndrome Research. Some larger grants are also available through this 501 (c) 3 non-profit group. Shwachman-Diamond America not only supports Shwachman-Diamond Syndrome research, but it also supports Shwachman-Diamond Syndrome Education.

Shwachman-Diamond America's Mission:

• Fund and promote research in all aspects of SDS.
• Disseminate current medical literature to families and physicians.
• Help fund the biennial International Congress on SDS.
• Facilitate the development of a medical management plan.
• Promote parent education through a family support network.

If you are a researcher and are interested in submitting a grant proposal for an Alex Turnquist Memorial Research Grant, the following are the guidelines:

Shwachman-Diamond America awards Alex Turnquist Memorial Research grants up to $10,000. Grant proposals are accepted throughout the year. SDA does not have a grant request form.

Shwachman-Diamond America requires that the grant proposal be in writing and include the following:

1. Name of Applicant, Principal investigator, project title and summary of proposed investigation (include specific aims, significance and background, any preliminary studies...)
2. A detailed description of your hypothesis/hypotheses and proposed methodologies
3. Relevance of the research to Shwachman-Diamond Syndrome
4. Biographical information on the principal investigator and co-principal investigator, if relevant
5. A detailed budget sheet (grants are available up to $10,000)
6. Statement of facilities available
7. A starting date for the project

General Conditions for the Awarding of Alex Turnquist Memorial Research Grants:

1. The board wishes to receive periodic progress reports. They need not be lengthy. These reports will help Shwachman-Diamond America give updates to our donors, allow evaluation of progress by our medical advisor and assist SDA in future fundraising efforts.
2. Any publications distributed as a result of your research should give proper reference to Shwachman-Diamond America.

You can submit a grant proposal by emailing the Word or PDF file to: shwachmandiamondamerica@embarqmail.com or via regular mail:

Shwachman-Diamond America

931-B South Main Street #332

Kernersville, NC 27284

If you need more information, you can visit the Shwachman-Diamond America website or contact Pattie Curran at 336-423-8158.

What is Shwachman-Diamond Syndrome?

Shwachman-Diamond Syndrome (SDS), first described in 1964, is a rare, genetic (autosomal recessive), multi-systemic disorder affecting the pancreas, bone marrow, and skeleton. The most common symptoms are pancreatic dysfunction (malabsorption), low neutrophil count and short stature. Other organs may also be involved in some SDS patients. Shwachman-Diamond Syndrome affects people differently and not all people with SDS have all of these symptoms. In Infancy, the first symptoms are usually loose, foul smelling, greasy stools and failure to gain weight and grow normally. The pancreas fails to produce the enzymes essential to digest food properly. Because of the exocrine pancreatic dysfunction (malabsorption), the child does not absorb enough nutrients, most commonly the fat-soluble vitamins, to grow and develop normally. Oral enzyme replacement therapy helps these children to digest their food, but many still need to take special vitamin supplements. Improving nutritional status does not necessarily improve the growth of children with Shwachman-Diamond Syndrome.

The bone marrow, where blood cells are produced, is also affected in Shwachman-Diamond Syndrome. White blood cells, which fight infection, are most commonly affected. Neutropenia is the most common hematological abnormality in SDS, though all blood cell lines may be affected. Anemia and blood clotting problems are also common in SDS patients. Because of the bone marrow dysfunction, these children are at a greater risk of developing life-threatening infections. Shwachman-Diamond Syndrome is considered to be a bone marrow failure syndrome, because up to 30% of these children will develop leukemia or aplastic anemia.





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