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Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years. As a mother of two young adult PKU children (Cameron & Brooke), founder of Cambrooke and longtime board member (24-years) of the New England Connection for PKU and Allied Disorders (NECPAD), Lynn Paolella has always strived to empower the metabolic community to take advantage of Cambrooke’s facility in Ayers, Massachusetts at no charge in an effort to create ‘their own cooking, educational and/or social event’. Cambrooke’s manufacturing facility is equipped with a state of the art test kitchen, dining room & game room, which are highly suitable for social events and meetings. A tour of Cambrooke’s facility along with taste-testing of products is always available.

Local resident Susan Needleman, an adult with Classical MSUD, spearheaded a social meet-up event for individuals with MSUD and their families on August 5th. A group of 10 attendees participated in a low protein cooking workshop which focused on creating numerous delicious baked goods, both sweet and savory, featuring Cambrooke’s newly launched frozen Readi-Dough. Lynn demonstrated many examples of how to use the multipurpose dough and in turn, the group offered suggestions & created their own innovative recipes. Possible uses for this product include focaccia bread, calzones, Stromboli, pot pie pastry, cheesy breadsticks, and fried dough with cinnamon sugar.

NBS-MSUD Connect: Advancing MSUD Research And More

NBSCONNECT.ORG

Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

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I want to help out, but I don’t know how

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Fundraising

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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A Child's Life

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