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

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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

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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

past speaking engagements:

MassBio Patient Advocacy Summit - Virtual - "Engaging the Post-Millenial Generation" (November 2020)
Alex TLC Community Weekend - Virtual - "Young ALD Carriers" (November 2020)
Rare New England Annual Conference - Virtual - "Advocacy at Any Age" (October 2020)
Michigan Association of Genetic Counselors (MAGC) Annual Education Conference - Virtual - "Females with X-Linked Disorders: Not Just Carriers" (September 2020)
One Rare Experience - Virtual - "A book reading with Taylor Kane (August 2020)
International Children's Advisory Network Virtual Summit - Virtual - "Patient Advocacy: A Day in the Life of an Adult Advocate" (July 2020)
United Leukodystrophy Foundation Family Conference - Virtual - "Female Carriers" panel discussion (May 2020)
ALD Family Weekend Camp-At-Home - Virtual - "Converting Anxiety into Action: fundraising, volunteering, organizing, peer counseling" panel discussion (May 2020)
Centogene's Rare Disease Day - Berlin, Germany - "The Importance of Screening Carriers of X-linked Disorders" (February 2020)
Global Genes' Rare Patient Advocacy Summit - San Diego, CA - "Family Planning: Decisions and Considerations" session (September 2019)
United Leukodystrophy Foundation’s annual Scientific Symposium and Family Conference - Itasca, IL - "Women as Carriers" (June 2019)
NeuroConnect Summit - Rockville, MD - "Advocating Online" (May 2019)
Ultragenyx Rare Family Day - Novato, CA - "Young Adult Advocacy" (April 2019)
Centogene’s Patient Advocacy Interaction with Orphan Drug Companies: Accelerating the Discovery and Development of Treatment in Rare Hereditary Disease Conference - Rostock, Germany - “The Importance of Carrier Testing” (February 2019)
ALD Connect Annual Meeting & Patient Learning Academy - Philadelphia, PA - “Women with ALD: Not Just Carriers” (November 2018)
NORD’s Rare Diseases & Orphan Products Breakthrough Summit - Washington, DC - “The Next Generation of Rare Disease Advocates” panel discussion (October 2018)
My City Med’s Rare Fair - Virtual - “Pursuing Legislation That Matters (September 2018)
Believe LTD’s Annual ‘Powering Through’ Conference - Portland, OR - “A Conversation on Overcoming Life’s Obstacles” panel discussion (September 2018)
2018 Issues & Action Hydrocephalus Conference - Washington, DC - “Rare Disease Advocacy for Young Adults” (August 2018)
Young Adult Representatives of RDLA - Newport Coast, CA - “Young Adult Advocacy for Rare Diseases” (July 2018)
#YesSheCanCampaign Sparkle Summit - Bordentown, NJ - “New Jersey Youth Making an Impact” panel discussion (June 2018)
CRISPRCon - Boston, MA - “‘Culture Creators’: The role of thought leaders, trendmakers, and trust builders in societal conversations on gene editing” panel discussion (June 2018)
Rare Disease Day at National Institutes of Health - Bethesda, MD - “Engaging the Next Generation of the Rare Disease Community” panel discussion (March 2018)
EveryLife Foundation for Rare Diseases - Rare Disease Legislative Advocates Conference - Washington, DC - “Advocacy for Young Adults” (February 2018)
ALD Connect Annual Meeting & Patient Learning Academy - Bethesda, MD - “Young Adrenoleukodystrophy Carriers” (November 2017)
ALD Connect Annual Meeting & Patient Learning Academy - Boston, MA - “Young Adrenoleukodystrophy Carriers” (October 2015)
United Leukodystrophy Foundation Annual Conference - Baltimore, MD - “Fundraising for ALD Research” (August 2014)