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.Â
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?'.
Comments
It’s A Great News to Celebrate with you Viewer, I am truly living the life I have been looking for after Dr Kachi made me win my Powerball Lottery, I had been playing for a good 8years. It was a friend of mine who directed me to Dr Kachi because my friend Nancy has won the Powerball so many times and I don’t know how she got the match six numbers to play and win a very big amount of money, then the last time she won the Mega Millions I told her to tell me the secret on how she win. That’s when she started telling me about the powerful Dr Kachi who has been her helper. and she gave me Dr Kachi Text/Call Number:+1 (209) 893-8075 I texted the greatest spell caster Dr Kachi and I told him I wanted to win my Powerball with his spiritual rightful number and he told me I should give him 2hours to get everything done and hopefully Dr Kachi do it, and give me a winning numbers to play my ticket that make me win the prize of $223.3 Million Dollars Powerball lottery Tuesday i bought the winning ticket at the Carlie C’s IGA store in Hope Mills, that changed my life for good today, and Dr Kachi a strong spell caster and trust him when he says the results will manifest it’s Truth, God bless you Dr kachi for your kind help also can Email: drkachispellcast@gmail.com or website: https://drkachispellcaster.wixsite.com/my-site
Reviews and comments can be helpful most times. permit me to share that, in the first week of March 2024, I was convinced to invest in a fake Altcoin cryptocurrency platform through someone I connected with on Telegram , which I did but unfortunately after investing my money I discovered I could not withdraw or access my account on the fake platform. Lucky for me, I came across a review on funds recovery and I contacted Coinsrecoveryworldwide Service, and through their help and support I was able to recover my money. Losing money trading crypto can be frustrating but I am happy today that my funds are recovered and I wish to share with you their contacts as i know i am not alone on this boat, nobody deserves to be in such situation.
Telgram: @CRYPCOINSS
COINSRECOVERYWORLDWIDE[AT]GMAIL.COM
Wassap;+1[737 368-8915]
101 N BRAND BLVD.
11TH FLOOR GLENDALE CA 91203.
I want to share my experience about how I got My Wife Back. After three years of a broken marriage, My Wife left me with our two kids. We were constantly quarreling and struggling, which ultimately led to a serious breakup. My wife packed her things and moved away. Despite this, I was determined to reunite with her. But I was told by a reliable source, a very close co-worker, that Dr Kachi is a very dedicated, gifted and talented person, Then I met Dr. Kachi, a remarkable spell caster, who assured me that my wife would return within 24 hours after he prepared a love spell. I’m thrilled to say that Dr. Kachi kept his word! My Wife came back home, fell to her knees, and begged for my forgiveness. Today, our family is back together, and we are happy, healthy, and living together again. Dr. Kachi made my dreams come true by helping us reunite. If you need his assistance, divorce issues in your relationship you can contact him Text or Call at +1 (209) 893-8075, or visit his website at https://drkachispellcaster.wixsite.com/my-site Email him at drkachispellcast@gmail.com