Name: Taylor Kane
Title: Founder and CEO
Organization: Remember the Girls
Disease focus: Carriers of X-linked recessive genetic disorders, which are caused by an abnormality on the X-chromosome. Since males (XY) have only one X-chromosome, they develop the disorder. Females (XX), who have two X-chromosomes (one which contains an extra unaffected copy of the gene), have traditionally been deemed to be “just carriers” who are completely unaffected by the disorder. For most X-linked recessive disorders (which in actuality are not truly recessive), this is simply untrue. In addition to the fact that female carriers may pass the disorder along to their offspring, many do develop physical symptoms of the disorder, sometimes severe. Often, however, they fail to connect these symptoms with their carrier status, subjecting themselves to many years of physical problems that they should not have to tolerate.
Headquarters: Mount Laurel, New Jersey
How did you become involved in rare disease: I became involved in rare disease when I was three years old. My dad was diagnosed with a rare disease called adrenoleukodystrophy, or ALD for short. It was at the same time I was also found to be a carrier of the disease because of ALD’s inheriting pattern. My dad passed away two years after his diagnosis. I originally did it because I wanted to honor his memory. And because I knew that if the roles were reversed, it’s definitely something that he would’ve done.
Previous career: Currently a college student
Education: Working towards a B.A. in political communication and minors in women’s studies and public policy at George Washington University
Organization’s mandate: Many carriers of X-linked recessive disorders, for a long time, were thought to be just carriers. It was believed that it never physically affected us. We now know that for a large number of carriers that’s not true. Being a carrier also comes with difficult decisions regarding reproduction, since we do have a 50 percent chance of passing the disease on. And then of course there are the psycho-social symptoms as well, like uncertainty for the future, and things like that. If I had to sum up my organization’s mandate, I would say, raise awareness of carrier issues and dispel the notion that we are just carriers.
Organization’s strategy: I would say using social media to connect carriers and reach an audience to help spread awareness and educate people about carrier issues.
Funding strategy: I haven’t focused on fundraising yet. For the last two years I’ve been focusing on raising awareness and taking a poll of carriers to see what areas they’re most interested in, so I can decide where to direct funding. I’m going to be wrapping up that whole flash survey that I’m doing soon, and I hope to start fundraising in the near future. I’m still working on developing my strategy now.
What’s changing at your organization in the next year: Based on what I’ve heard from other carriers, I’m going to focus fundraising efforts for two different campaigns in the next year. The first being genetic testing to determine carrier status, and the second being to help women afford being able to have children through alternative methods (such as in vitro fertilization) that aren’t covered by insurance.
Management philosophy: Leadership by example
Guiding principles for running an effective organization: To be a strong communicator, remember to stay on top of your emails and messages on social media.
Best way to keep your organization relevant: I keep my organization relevant by constantly talking about it and making sure that it stays in people’s minds. I also constantly post about it on social media, whether I’m updating the Remember The Girls pages, or just posting about my latest efforts with my organization on my personal social media pages, which have more of a following than the Remember The Girls pages do. That’s how I keep it relevant.
Why people like working with you: I would say that people can tell that I’m very passionate about what I’m doing, and that I’m very genuine about my organization’s mission.
Mentor. My mom is my mentor. She’s always been by my side and we’ve definitely gotten a lot closer in the last couple of years. She’s taught me the value of hard work, but also reminds me that I’m still only 20 years old and that I have to make time to have fun, be a young adult, and be a college student.
On the Job
What inspires you: I would say my fellow young adult friends in the rare disease community inspire me. I’ve made a lot of close friends in the last year who are as passionate as I am. This has been so great because growing up, I never knew anyone who was influenced by a rare disease, or at least ones different than ALD. Having friends who are in their young 20s that are interested in the same things that I am and that can understand, has just been inspiring to me.
What makes you hopeful: People are taking interest in carrier issues. Typically, after I speak about Remember the Girls at a conference, or after I hold something like a Facebook Live event, which I just held last week, I’ll have people send me messages. They’ll say that this is something interesting, or something they’ve never heard of before. They say they’re glad that this is finally getting put on the agenda.
Best organization decision: My best decision has been to create an organization that brings carriers from all X-linked recessive diseases together. For a long time, my main focus was on ALD advocacy, and on ALD carrier advocacy. I’m glad that I decided to make Remember the Girls about all X-linked recessive carriers, because I think that that’ll definitely make the organization more powerful.
Hardest lesson learned: I would say nothing yet. My organization is still pretty new. It officially became a nonprofit in January 2017. And I’m pretty much the one who’s completely running it.
Toughest organization decision: I would say nothing yet. My organization is still pretty new. It officially became a nonprofit in January 2017.
Biggest missed opportunity: The only opportunities I’ve missed are due to the fact that I’m a full-time student and have a job and can’t commit to this as much as I’d like to once I graduate.
Like best about the job: I would say getting to meet so many new influential people. I’ve gotten close to a lot of people in the rare disease community. I have a lot of rare disease moms, as I like to call them, different women who I see pretty much at every conference that I’ve grown close to, and who I keep in touch with over the years. It’s great to feel like I have a rare disease family.
Like least about the job: I can’t commit more time to this until I graduate next year. I’m excited to be able to soon spend more time working on Remember the Girls.
Pet peeve: My pet peeve is when people are not responsive, particularly over email.
First choice for a new career: I’d be a talk show host. That’s always been my career goal.
Most influential book: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
Favorite movie: A Star is Born (2018)
Favorite music: Hip-Hop
Favorite food: Pizza with ranch dressing
Guilty pleasure: Taking naps with my dog
Favorite way to spend free time: Reading and watching documentaries
January 10, 2019