Life as a Carrier: Interview with Taylor Kane

Taylor Kane is on a mission to raise awareness about what life as carriers of X-linked conditions looks like.

A couple of weeks ago, I had the pleasure to meet Taylor Kane, the founder of Remember The Girls, an organization that supports women with X-linked disorders. We met through a panel we were part of for the 2021 Global Genes Summit. We had some time to catch up and ask her some questions about her life and work as a carrier. Below are her answers:

What does having a rare condition mean to you? How has it shaped your life?

I've known I was a carrier of Adrenoleukodystrophy (ALD) for as long as I can remember. When my dad was diagnosed in 2001, we learned that since ALD is an X-linked disease, I am an obligate carrier. In high school, I learned that I myself have a very high chance of developing symptoms of the disease such as bladder and bowel dysfunction, walking difficulties, neuropathy and more. I also have a 50% chance of passing ALD on to any children I have in the future. Since ALD is in my genes, I've been rare my whole life. It's a part of who I am, and has made me a more compassionate person. I know my future may have difficulties, but I am ready to embrace them head on!

What inspired you to start Remember The Girls?
"Carriers" of X-linked conditions have long been assumed to be asymptomatic carriers, when in fact many of us do get symptoms. In the ALD community, there still isn't a lot of research on our symptoms, since boys and men are considered the primary patient population. X-linked carriers also struggle with accessing supportive doctors, affordable family planning options and mental health support. I started Remember The Girls in 2017 to bring X-linked carriers together. Even though we are from different rare diseases, we as women are all working towards the same things.
What is the biggest challenge the rare community faces?
Awareness. If people aren't personally impacted by a rare condition, such as being a patient or having an affected family member, they don't know about the prevalence of rare diseases. We need to keep using our voices to make people know that over 7,000 rare diseases exist and there are 300 million people affected - it could save a lot of people from a long diagnostic odyssey. 
Where do you see your organization in 2 years? 5 years?
Now, Remember The Girls supports over 1,000 X-linked carriers. In 2 years, I hope for this to be 5,000. There are so many of us out there across 100+ X-linked conditions. We need to be connected! In 5 years, I hope Remember The Girls can help fund research into women impacted by X-linked conditions.
What advice would you give to 14 year old Taylor?
I would tell her to stay true to herself. I used to be very private about my family's rare disease journey because I didn't want to feel different. Now, I say 'why fit in when you can stand out?'.
Life as a carrier Taylor Kane at conference


  • Posted by Evelyn Martinez on

    GET RICH WITH BLANK ATM CARD, Whatsapp: +18033921735

    I want to testify about Dark Web blank atm cards which can withdraw money from any atm machines around the world. I was very poor before and have no job. I saw so many testimony about how Dark Web Online Hackers send them the atm blank card and use it to collect money in any atm machine and become rich {DARKWEBONLINEHACKERS@GMAIL.COM} I email them also and they sent me the blank atm card. I have use it to get 500,000 dollars. withdraw the maximum of 5,000 USD daily. Dark Web is giving out the card just to help the poor. Hack and take money directly from any atm machine vault with the use of atm programmed card which runs in automatic mode.

    You can also contact them for the service below

    Western Union/MoneyGram Transfer Bank Transfer PayPal / Skrill Transfer Crypto Mining CashApp Transfer Bitcoin Loans Recover Stolen/Missing Crypto/Funds/Assets


    Telegram or WhatsApp: +18033921735


  • Posted by obodubu monday on

    Dr. Obodubu Monday is recognised all over the world of marine kingdom, As one of the top fortunate and most powerful spell casters doctor of charms casts from the beginning of his ancestors ship until now Dr. Obodubu Monday lives strong among all other spell casters, there have never been any form of impossibility beyond the control of Dr. Obodubu Monday it doesn’t matter the distance of the person with the problems or situation, all you have to do is believe in the spell casting Dr. Obodubu Monday cast that works, he always warns never to get his charms cast if you do not believe or unable to follow his instruction. it is the assignment of the native doctor Dr. Obodubu Monday to offer services to those in need of spiritual assistance not minding the gravity of your situations or distance as long as water, sea, ocean, lake, river, sand, etc. are near you, then your problems of life would be controlled under your foot. if you need any spiritual help on any of these WhatsApp Doctor Obodubu on : +234 705 993 7909 or hangout/ google chat

    Get Your Love Back

    Fruit Of The Womb


    Business Boom

    Financial Breakthrough

    Get Rich Without Ritual

    Do As I Say

    Bad Dream

    Promise And Fail


    Land/Court Case

    Mental Disorder

    Political Appointment

    Visa Approval


    Examination Success

    Spend And Get Back

    Good Luck

    Natural Neath



    Sickle cell


    Win Court case

    Promotion At Work

    Commanding Tone

    Protection Ring

    Marriage Success

    Love Ring

    Favour Ring

    Recover Lost Glory

    Spiritual Power For Men Of God

    Travel Success Ring

    Job Success

    lottery/ win

    And Many, More

    make haste to Dr Monday on WhatsApp +234 705 993 7909 for spiritual problem today and you will surely get solution to all your predicament or hangout/ google chat

  • Posted by Queen on

    Hi guys, i don’t have much to say now now, Than to say thanks to Dr. Monday for rescuing me and my family from poverty, and for getting my Wife and my Job back, i love playing lottery , but winning is my biggest problem, Ill never forget the day i come in contact with Dr Monday, whose lottery spell make me a winner, some million Dollars , after giving me a sure winning numbers within 3 days to play,my financial status is settled for good,now i have started to live my dream life after 12 years of playing the lottery A big thanks to Dr Monday, am grateful for all you have done for me and family, he can be reach on Via WhatsApp +234 705 993 7909

Leave a comment