Organization Spotlight: Remember the Girls

Apr 6

Our Mission

Remember The Girls aims to break the stigma facing females impacted by X-linked conditions, which are genetic conditions caused by a change in a gene on the X chromosome, one of the chromosomes that help determine biological sex. Remember The Girls helps by providing them with tools to seek support, engage with research, and access family-planning options, as well as by advocating for increased attention from medical professionals to the physical, emotional, and reproductive needs of this community.

Our Origin Story

Remember The Girls was founded in 2017 by Taylor Kane, a carrier of the X-linked condition adrenoleukodystrophy (ALD). Growing up, Taylor knew she was a carrier for as long as she could remember, but was consistently assured that she was “just a carrier” and would never be impacted by ALD. In high school, she learned there were many ALD “carriers” who were experiencing symptoms but weren’t being taken seriously. After getting more involved in ALD carrier advocacy, she discovered there were many other X-linked diseases where women and girls were being sidelined. Taylor felt it essential to raise awareness of the fact that X-linked carriers not only face difficulties when it comes to accessing family planning options and genetic testing, but also may be at risk of symptoms, but are often barred from research and marginalized by medical professionals. Determined, Taylor decided to start a nonprofit organization to bring together females impacted by X-linked conditions and advocate for their needs.

Who We Support/What We Do

Remember The Girls is the sole organization that brings together females impacted by different X-linked conditions. In addition to creating community, we build educational resources, lead advocacy initiatives to increase access to family planning options, genetic testing, and research opportunities, and collaborate with key stakeholders to advance quality of life for females impacted by X-linked conditions.