Remember The Girls' mission is to raise awareness of the many issues facing female carriers of x-linked recessive genetic disorders; to provide a forum for x-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry x-linked disorders.
Taylor Kane is a 20-year-old carrier of the x-linked recessive disease Adrenoleukodystrophy (ALD). Her father, Jack, was diagnosed with ALD when she was three-years-old, Jack's condition quickly deteriorated, and he was completely bedridden for many months, unable to talk, walk and swallow, or understand much of what was going on around him. He died when she was five. Taylor became an advocate for ALD families at a very young age, helping to raise over $200,000 for ALD research. When she was in high school, she lobbied the senate and assembly in her home state of New Jersey, to introduce and pass a bill requiring the screening of newborns for ALD. She subsequently testified before both houses in support of the bill, and petitioned the governor to sign the bill into law, which he did in 2013.
Taylor founded Remember the Girls after learning that more than 50% of female ALD carriers go on to develop physical symptoms--sometimes severe ones, and that many carriers of the other x-linked recessive disorders are similarly affected. She soon realized that these female carriers, as a group, are often overlooked by the medical community, omitted from clinical trials, and have little peer or other support. While Taylor fervently believes that it is vital to continue to search for treatments and cures for the males who are typically more severely affected by these genetic diseases, Taylor also believes it is important to REMEMBER THE GIRLS!
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