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    Brain Tissue Donation:

    If you have experienced the death of a loved one with PWS, you can arrange for brain tissue donation by calling our 24-hour toll-free hotline at 1-877-333-0999.

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    Help Advance Research Through Brain Tissue Donation

    Brain tissue donation is an important way families can contribute to PWS research. Donated brain tissue gives researchers a unique opportunity to study how PWS affects the brain and identify new treatment opportunities.

    Knowing about brain tissue donation before a loved one dies is important. Because tissue must be collected soon after death, families need to know what to do and who to call when the time comes.

    Why Donate Brain Tissue?

    PWS affects the brain in ways that cannot be fully understood through brain imaging, animal models, or other research methods. Studying donated human brain tissue allows researchers to examine the biology of the PWS brain directly.

    Donated tissue can help researchers better understand PWS and identify potential targets for new treatments.

    What Happens After the Passing of Your Loved One?

    FPWR partners with Autism BrainNet, a national program that collects and preserves brain tissue for research.

    When a person with PWS dies, a family member or other representative should call the Autism BrainNet 24-hour hotline at 1-877-333-0999 as soon as possible. A coordinator will explain the process and determine whether tissue donation can be arranged.

    Families do not need to make arrangements in advance. However, knowing about the opportunity and discussing your loved one's wishes ahead of time can help ensure that everyone knows what to do when the time comes.

    The tissue recovery procedure is performed by a pathologist and does not prevent a viewing or traditional funeral arrangements. Autism BrainNet covers the costs associated with tissue donation.

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    If you are considering brain tissue donation for yourself or a loved one with PWS:

    • Learn about the donation process.

    • Discuss your loved one's wishes with family members so everyone understands the plan.

    • Keep the Autism BrainNet hotline number readily available: 1-877-333-0999.

    When the Time Comes

    Call Autism BrainNet at 1-877-333-0999 as soon as possible after death. The hotline is available 24 hours a day, 7 days a week.  Your call will connect you with a coordinator who can answer questions and guide your family through the donation process.

    A Gift to PWS Research

    Brain tissue donation can provide researchers with information that cannot be obtained in any other way. By considering donation and sharing your wishes with your family, you can help make this important research possible.

    For questions regarding the brain tissue donation process, please call Autism BrainNet at 877-333-0999 or visit the Autism BrainNet website.