Jul. 17, 2020
Posted by Laura Mullen
At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls
Taylor advocates for those living as… Carriers of all X-linked diseases
Taylor is located in… Mount Laurel, New Jersey
Taylor most frequently checks her… Twitter page
How Taylor got here… In 2001, when I was three-years-old, my dad was diagnosed with a rare X-linked disease called adrenoleukodystrophy (ALD). At the same time, I found out I was a carrier of the disease. My dad passed away in 2003 when I was in kindergarten. Before he passed, he and my mom started a nonprofit to raise money for ALD research and awareness of the disease. My mom and her family and friends helped her to continue running this organization and holding annual events, and in elementary school, I wanted to help. I began to tell my dad’s story and in fifth grade published an article in a local magazine, which resulted in increased donations to our annual event. It was then I realized the power of telling your story.
What’s happening at Remember the Girls… Our mission is to support carriers of X-linked diseases who have long felt that their concerns are brushed under the rug. We hope to bring carriers together and raise awareness about the potential of symptoms, reproductive concerns, psychosocial impacts of being a carrier, and breaking the stigma associated with being “just” a carrier. Our mission is to make sure our voices are heard!
The impact of COVID-19… Females in my community may be immunosuppressed or have children who are immunosuppressed, landing them in the high-risk category, alongside many other rare disease patients. We have a group on Facebook of 600 females with X-linked conditions. Members are regularly conversing in our group and we are also holding virtual meetups!
Taylor’s outlook… Before COVID-19, my main way of remaining hopeful was by reading the messages from carriers that I receive now and then that say they just learned of their carrier status and are so grateful to have found Remember the Girls. Also, the power and positive influence of having an online support community. It has created such a strong bond between females of all X-linked diseases.
This may be surprising, but during COVID-19, I remain hopeful by watching the news. I like to stay updated on the curves flattening, potential therapies for COVID-19 patients, and the development of a vaccine. It’s great to see scientists and medical professionals coming together to make this happen.
Taylor’s social distancing pastimes include… Playing the ukulele, practicing yoga, reading, gardening, and playing with my kitten.
Taylor’s lessons for other leaders… Especially coming from the perspective of a young founder (eighteen at the time), I think it is so important to be confident and not afraid to ask questions and advice from others in the rare disease community. If you face any negativity don’t feel discouraged. Constructively take criticisms, but if it doesn’t serve you then don’t let it discourage you.
Taylor’s favorite NORD resource… I love the NORD webinars. I usually share them with the board of directors and members. Also, being able to attend the NORD member leader event at the NORD Summit last year was awesome! I found the table discussions during dinner very valuable.
Taylor wants you to read… Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman
Words of wisdom… “I saw that my life was a vast glowing empty page and I could do anything I wanted” -Jack Kerouac