Kane, Taylor

Speaker Information
First Name
Taylor
Last Name
Kane
Email
[email protected]
Phone
(609) 332-3944
Organization
Remember The Girls
Job Title
Executive Director
Credentials
Carrier, patient advocate, speaker, author
What rare disease do you represent?
Females affected by X-linked diseases (“carriers”)
How many years have you been involved with Rare Diseases?
10+ years
As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity:
White (Non-Hispanic)
Biography
Taylor Kane has spent most of her life as a rare disease advocate. She is the founder and executive director of Remember The Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders. Taylor’s activism began when she was in grade school, shortly after her father died from the rare X-linked disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. She is an award-winning activist, an accomplished speaker, and a respected author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.
Health & Safety Comfort Level
I’m ready to participate in an in person meeting with the safety measures NORD will have in place
Travel Distance from Cleveland OH:
1.5 hours
Presentation Information
Proposed Presentation Title
Not “Just” Carriers — Females with X-linked Diseases
Presentation Summary
X-linked genetic disorders are caused by an abnormality on the X chromosome. Since males have only one X chromosome, they develop the disorder. Females, who have two X chromosomes, have traditionally been deemed to be unaffected carriers. For most X-linked disorders, this is untrue. Many X-linked carriers do develop physical symptoms of the disorder, sometimes severe.Being a carrier can be frightening and lonely. Many carriers do not personally know any other carriers (except perhaps in their immediate family), so there isn’t really anyone they can talk to who understands how they feel. Their care providers may not be helpful because there are few studies pertaining to carriers. In addition to suffering anxiety about possibly developing symptoms, carriers may be devastated by the illness or death of a male relative or worried about their future reproductive options.

There has long been a gender bias in medicine. For decades, patients enrolled in clinical trials were predominantly male. Most of the studies that did include women did not report results by gender. Although this has begun to change in recent years and medicine is recognizing that diseases and treatments affect the sexes differently, there is still an enormous lack of scientific research and understanding when it comes to female carriers of X-linked disorders. For most X-linked disorders, the medical profession is just beginning to recognize that females are not “just carriers.”

We need the rare disease community to acknowledge the issues faced by X-linked females and support our advocacy for greater access to research and treatments, accessible family planning options, and mental health care.

Please provide up to 3 examples of previous presentation experience, include links to videos if applicable.
https://www.youtube.com/watch?v=zKJ_g345maU


https://www.youtube.com/watch?v=liNOCacpLso
Target Audience:
– Men and women affected by X-linked genetic diseases diseases
– People who are in families impacted by X-linked genetic diseases
– Genetic counselors
– Medical professionals who specialize in X-linked diseases (there are over 100)
– Women’s health advocates
– Carriers of all types of genetic disorders
Learning Outcomes:
– Many females who carry X-linked diseases develop symptoms, yet aren’t often included in the patient populations of their conditions
– Research on X-linked diseases is developing and shows there are many affected females, yet these X-linked carriers still struggle to access medical providers knowledgable about their symptoms or even accepting that they can get symptoms
– The stigma associated with being a carrier is hurtful to our community, we want to reclaim the term and empower X-linked carriers to advocate and push for more research and access
Co presenter or additional panelist recommendations
First Name Last Name Organization Job Title Email Address
Emma Bliss Remember The Girls President [email protected]
Felicia Morton CGD Association of America Executive Director [email protected]
Shellye Horowitz Hemophilia Federation of America Associate Director, Education [email protected]
Kimberly Ramseur American Medical Association Senior Policy Analyst

 

Consent
As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree: