Three Fates Fiber

Whatever comes to my twisted little mind..mostly family, life, and crafting…

Adrenoleukodystrophy (ALD); Compassion Into Action by Misery White

on January 27, 2012

Ben ( also known as Power Boy) is my nephew and he’s battling ALD, and unfortunately his fight is a long, painful, and difficult journey…

S.T.A.N.D.

This started as a letter I was going to send to Ben, a.k.a. Power Boy, after recently meeting him and his family at Mayo Clinic in Rochester, Minnesota. Ben was undergoing tests there to determine status of progression of his ALD. ALD refers to Adrenoleukodystrophy, a rare hereditary disorder that affects the brain, adrenal glands, and myelin sheath which insulates many nerves in the central and peripheral nervous systems.

To find out more about Ben, ALD, and how you can contribute to alleviate some of the out-of-pocket family travel and boarding expenses needed for increased Mayo appointments, please visit “Power Boy ALD Awareness on Facebook.

As another means to learn and show support, observe Rare Disease Day, Feb 2, 2012, with “L.O.V.E.: Let Our Voices Echo.” On this day, patients and families will share their stories to focus a spotlight on rare diseases as an important global…

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