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
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Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
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Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
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Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
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Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
https://drpeterspellcaster.mystrikingly.com/
REAL SPELL CASTER 2023/2024 GET YOUR EX LOVER BACK NO MATTER WHY THEY LET YOU, CONTACT DR PETER WHATSAPP +2348162247974 DRPETERSPELLCASTER21@GMAIL.COM
Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
https://drpeterspellcaster.mystrikingly.com/
REAL SPELL CASTER 2023/2024 GET YOUR EX LOVER BACK NO MATTER WHY THEY LET YOU, CONTACT DR PETER WHATSAPP +2348162247974 DRPETERSPELLCASTER21@GMAIL.COM
Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
https://drpeterspellcaster.mystrikingly.com/
REAL SPELL CASTER 2023/2024 GET YOUR EX LOVER BACK NO MATTER WHY THEY LET YOU, CONTACT DR PETER WHATSAPP +2348162247974 DRPETERSPELLCASTER21@GMAIL.COM
Hello friends, This is my testimony on how my husband came back to me.. I want to say a very big thanks and appreciation to DR PETER spell caster for bringing back my husband who left me for almost 2 year, I feel like my life is completely over, so one day as i was surfing on the internet for recommend spell caster who will help me to bring my husband back, Finally i met a writing how so many testimony talking about how DR PETER help to restore relationships back within some few days, I laugh it out and said i am not interested but because i was so desperate, i decided to give it a try so i contacted the spell caster called DR PETER and explain my problems to him, and he was so nice and also consoling which was really great, then he started the love spell luckily within 48 hours my husband really called me and started apologizing for all he had caused me and be begging me to accept him back and we are living together and happily married I am the happiest woman on earth today because DR PETER has done a wonderful deeds in my life and i will continue to share this testimony, contact him on his email drpeterspellcaster21@gmail.com OR drpeterspellcaster@yahoo.com directly on WHATS-APP +2348162247974
Blog: https://drpeterspellcaster.blogspot.com/
Website: https://drpeterspellcaster.wixsite.com/my-site-1
https://drpeterspellcaster.mystrikingly.com/