Finding Purpose In Loss and Rare Circumstances with Taylor Kane

Taylor Kane is a 23 year old carrier of the X linked 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 or swallow, or understand much of what was going on around him. Sadly, Jack passed away when Taylor was just 5 years old.

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, 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 went on to create an organization called 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 other carriers of X-linked 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.

Taylor is here to share with us more about her ongoing mission with Remember The Girls and all the good she is doing to advocate for a cause and a community that is so personal to her.

Learn more about Taylor Kane at TaylorKane.com
Learn more about Remember The Girls HERE
Follow Taylor on IG @rarelikeher
Follow Remember The Girls on IG @rememberthegirls
Follow @rarelikeusbook
Purchase  "Rare Like Us", Taylor's Memoir