Future Projects to be Funded

Supporting Rare and Special Families

FUTURE PROJECTS TO BE FUNDED

Biorepository

Now that we have access to a biorepository, a significant next step is to facilitate the collection of samples. The goal is to collect blood, saliva and tissue samples for as many MWS patients as possible, especially for those who have genetic test results in the MWS patient registry. These two components, samples (blood, saliva, tissue) and genetic test results are vital to ongoing and prospective research. Funding is needed to help cover the costs of shipping the collection kit, medical provider costs to collect the sample and administrative fees to manage the process.

Estimated cost to collect 200 sample specimens: $20,000

Educational Video

Our goal is to provide a professionally produced educational video about MWS that caregivers could use with health care providers, teachers, therapists and anyone else interacting with a MWS patient. The video would feature Drs. Mowat and Wilson discussing potential topics such as diagnosis, clinical manifestations, clinical management, developmental delays, etc. The intent would be to help health care providers, ancillary care providers and teachers better understand how they can best serve an MWS patient given the diagnosis. Our goal includes providing the video with captioning in Spanish, French, Italian, German and Portuguese.

Estimated cost: $22,000

Genetic Testing

Genetic test results are one of the most important components of a rare disease registry. As a result, the MWS Foundation wants to help families who have not yet been able to have a genetic test completed. Our plan is to partner with a genetic testing lab, secure a reasonable cost for the test and subsidize those costs if a family’s insurance does not cover the costs for genetic testing. This in turn will help increase the number of genetic test results that would be available in the registry.

Estimated cost: $15,000

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