Speaking | Taylor Kane

Public speaking

Taylor's speaking topics include, but are not limited to:

rare disease advocacy

Taylor's rare disease advocacy journey began in elementary school after losing her father to a rare genetic disease of which she is also a carrier. Over the years, she has been involved in various advocacy initiatives, most notably founding her own nonprofit, Remember The Girls, in 2017. At 22 years old, she is an established speaker and leader in the rare disease community.

building your brand

Screen Shot 2020-01-27 at 11.41.25 PM.pn

Years of advocacy work has taught Taylor a lot about controlling her narrative and building a brand, both on and offline. She believes in harnessing the power of social media to showcase her personality, skills, and accomplishments, and inspire people to action. She trusts that staying true to herself has helped her achieve her goals.

Overcoming grief+adversity

When Taylor was 3 years old, her dad was diagnosed with a rare, terminal illness. He passed away when she was in kindergarten, leaving her to navigate life without a father. To cope with his loss and honor his memory, Taylor turned to volunteerism and advocacy. Taylor feels helping others is the best way to overcome grief and deal with adversity.

Community engagement

Taylor has been building communities since high school, and in 2017 founded her nonprofit, Remember The Girls, to empower carriers of X-linked genetic disorders. In just three years, she has connected over 600 carriers through social media advocacy and outreach campaigns. On top of that, Taylor has a vast network of rare disease advocates and influencers.

Young adult advocacy

Taylor is a strong believer that no one is too young to get involved in community service and advocacy. Having been a volunteer and advocate since elementary school, she has seen first-hand the power of young people's involvement in changing the world for the better. Today, she encourages other teens and young adults to get involved, and is of the opinion that their perspectives are vital.

Surviving & Thriving as a carrier of a genetic disease

71542933_2704416569602446_23321037621113

When her father was diagnosed with ALD, Taylor's family found out that she was also a genetic carrier of the disease. Taylor grew up with the understanding that there is a 50% chance she will pass the disease to her future children, and in the last few years has come to terms with the high possibility of future symptoms. Still, she remains positive and hopeful.

Bookings

Speaking Engagements:

Upcoming-

Living as a young adult carrier of ALD, Alex TLC Community Weekend Conference - Birmingham, UK | Apr 2023
Carrier panel, CTD/CCDS International Symposium - Paris, France | Sep 2023

Past -

The Rare Voice: Patients, Family Caregivers, and Research, Rare Patient Voice RARE REV-inar - Virtual | Feb 2023
#RAREis Representation, Horizon Therapeutics - Virtual | Dec 2022
The Changing Landscape of the ‘ Carrier’ Experience, National Society for Genetic Counselors Annual Conference - Nashville, TN | Nov 2022
Remember The Carriers, Harmony 4 Hope Rare Storytellers - Virtual | Oct 2022
Finding and Retaining Volunteers, Global Genes RARE Patient Advocacy Summit - San Diego, CA | Sep 2022
An Unmet Need, CENTOGENE Rare Disease Day Conference - Virtual | Feb 2022
My ALD Life, Alcyone Therapeutics Lunch & Learn - Virtual | Feb 2022
Females with X-Linked Disorders: Not Just Carriers, Cooper Genomics Continuing Education Series - Virtual | Nov 2021
What Everyone Needs to Know Before Starting or Adding to Their Family, Access to Equitable Carrier Screening Coalition - Virtual | Oct 2021
Embracing Uncertainty - Rare Young Adults Leading for Change, Global Genes RARE Patient Advocacy Summit - Virtual | Sep 2021
VIP Event Host - Sanofi Genzyme TORCH Awards - Virtual | Sep 2021
Using Social Media for Rare Disease Awareness & Content Building, Global Genes Foundation Alliance RARE Leader Lunch and Learn - Virtual | Aug 2021
Females with X-linked Disorders: Not Just Carriers, Illinois Society of Genetic Professionals Annual Symposium - Virtual | May 2021
Serving on a nonprofit Board of Directors as a young adult, YARR Leadership Academy - Virtual | Apr 2021
Engaging the Post-Millennial Generation, MassBio Patient Advocacy Summit - Virtual | Nov 2020
Young ALD Carriers, Alex TLC Community Weekend - Virtual | Nov 2020
Advocacy at Any Age, Rare New England Annual Conference - Virtual | Oct 2020
Females with X-Linked Disorders: Not Just Carriers, Michigan Association of Genetic Counselors (MAGC) Annual Education Conference - Virtual | Sep 2020
Patient Advocacy: A Day in the Life of an Adult Advocate, International Children's Advisory Network Virtual Summit - Virtual | Jul 2020
Female Carriers, United Leukodystrophy Foundation Family Conference - Virtual | May 2020
Converting Anxiety into Action: fundraising, volunteering, organizing, peer counseling, ALD Family Weekend Camp-At-Home - Virtual | May 2020
The Importance of Screening Carriers of X-linked Disorders, CENTOGENE Rare Disease Day - Berlin, Germany | Feb 2020
Family Planning: Decisions and Considerations, Global Genes RARE Patient Advocacy Summit - San Diego, CA | Sep 2019
Women as Carriers, United Leukodystrophy Foundation Scientific Symposium and Family Conference - Chicago, IL | Jun 2019
Advocating Online, NeuroConnect Summit - Rockville, MD | May 2019
Young Adult Advocacy, Ultragenyx Rare Family Day - Novato, CA | Apr 2019
The Importance of Carrier Testing, CENTOGENE Patient Advocacy Interaction with Orphan Drug Companies Conference - Rostock, Germany | Feb 2019
Women with ALD: Not Just Carriers, ALD Connect Annual Meeting & Patient Learning Academy - Philadelphia, PA | Nov 2018
The Next Generation of Rare Disease Advocates (keynote), NORD Rare Diseases & Orphan Products Breakthrough Summit - Washington, DC | Oct 2018
Pursuing Legislation That Matters, My City Med Rare Fair - Virtual | Sep 2018
A Conversation on Overcoming Life's Obstacles, Believe LTD Annual 'Powering Through' Conference - Portland, OR | Sep 2018
Rare Disease Advocacy for Young Adults, 2018 Issues & Action Hydrocephalus Conference - Washington, DC | Aug 2018
New Jersey Youth Making an Impact, #YesSheCanCampaign Sparkle Summit - Bordentown, NJ | Jun 2018
’Culture Creators': The role of thought leaders, trendmakers, and trust builders in societal conversations on gene editing, CRISPRCon - Boston, MA | Jun 2018
Engaging the Next Generation of the Rare Disease Community, Rare Disease Day at NIH - Bethesda, MD | Mar 2018
Advocacy for Young Adults, EveryLife Foundation for Rare Diseases Rare Disease Legislative Advocates Legislative Conference - Washington, DC | Feb 2018
Young ALD Carriers, ALD Connect Annual Meeting & Patient Learning Academy - Bethesda, MD | Nov 2017
Young ALD Carriers, ALD Connect Annual Meeting & Patient Learning Academy - Boston, MA | Oct 2015
Fundraising for ALD Research, United Leukodystrophy Foundation Annual Conference - Baltimore, MD | Aug 2014