SPOTLIGHT STORIES
Spotlight Von Willebrand Disease
Kari Gregory: Board Member, Patient Representative (2021-23), Lioness
Kari Gregory is a mother of three children and an attorney in the San Francisco Bay Area. Her oldest child, Kayla, was diagnosed with Type 3 VWD after she woke up with spontaneous bruising on her legs and feet at six weeks of age.
As part of her daughter’s diagnosis, Kari learned that she and her husband, Chris, both had Type 1 VWD. With her diagnosis, Kari realized that she had many of the common bleeding symptoms, like easy bruising and heavy menstrual cycles.
This is a story about a mother and daughter sharing and being connected on a parallel journey. It chronicles a mother in search of information, options, support and education. It is also a story about empowerment, advocacy and hope.
Spotlight Von Willebrand Disease
Nancy Foti: Inaugural Youth Staff, Focused Observer, Champion Volunteer
Nancy Foti’s story begins as a high school student looking for a volunteer opportunity to enhance her resumé for college applications. It started innocuously: stuffing envelopes and packing gift bags for “Making the Connection”. This was the first national Type 3/ Von Willebrand Disease Conference ever to be held in the United States. This was early 2017; before VWD Connect Foundation was formally established. A lifetime ago!
Today, she is an indispensable member of VWD Connect Youth Staff. Her story line speaks to how finding engagement, understanding and connection to this rare disease can be transformational to finding purpose.
Spotlight Von Willebrand Disease
Cody Kester: Patient, Advocate, High Gear Activist
Cody Kester has Type 3/Severe Von Willebrand Disease. He is four months into his job as a volunteer fireman for hometown Alma, Arkansas and neighboring communities. At 6’4” and 400 lbs., and an admittedly large “squash”, his Chief had challenges finding the right gear as Kester set out to fulfill his 160 hours of classroom training before being deployed on his first on-call emergency. But the fates have a sense of humor.
SPOTLIGHT STORIES
Spotlight Von Willebrand Disease
Kari Gregory: Board Member, Patient Representative (2021-23), Lioness
Kari Gregory is a mother of three children and an attorney in the San Francisco Bay Area. Her oldest child, Kayla, was diagnosed with Type 3 VWD after she woke up with spontaneous bruising on her legs and feet at six weeks of age.
As part of her daughter’s diagnosis, Kari learned that she and her husband, Chris, both had Type 1 VWD. With her diagnosis, Kari realized that she had many of the common bleeding symptoms, like easy bruising and heavy menstrual cycles.
This is a story about a mother and daughter sharing and being connected on a parallel journey. It chronicles a mother in search of information, options, support and education. It is also a story about empowerment, advocacy and hope.
Spotlight Von Willebrand Disease
Nancy Foti: Inaugural Youth Staff, Focused Observer, Champion Volunteer
Nancy Foti’s story begins as a high school student looking for a volunteer opportunity to enhance her resumé for college applications. It started innocuously: stuffing envelopes and packing gift bags for “Making the Connection”. This was the first national Type 3/ Von Willebrand Disease Conference ever to be held in the United States. This was early 2017; before VWD Connect Foundation was formally established. A lifetime ago!
Today, she is an indispensable member of VWD Connect Youth Staff. Her story line speaks to how finding engagement, understanding and connection to this rare disease can be transformational to finding purpose.
Spotlight Von Willebrand Disease
Cody Kester: Patient, Advocate, High Gear Activist
Cody Kester has Type 3/Severe Von Willebrand Disease. He is four months into his job as a volunteer fireman for hometown Alma, Arkansas and neighboring communities. At 6’4” and 400 lbs., and an admittedly large “squash”, his Chief had challenges finding the right gear as Kester set out to fulfill his 160 hours of classroom training before being deployed on his first on-call emergency. But the fates have a sense of humor.
At the 2019 VWD Connect Foundation Conference we held a Special Symposium on Period Management. We learned from 23 participants that over half had been to the Emergency Room at least one time for treatment of heavy menstrual bleeding (HMB).
– 2019 Special Symposium on Women and Their Periods Participants
“You have no idea! After living with VWD 3 not knowing or having met anyone with this blood disorder, I’m no longer alone!! This is too good to be true.”
-2017 Conference Participant
During a special symposium on women and their periods in 2019 we learned from 23 participants that over half turned to the Emergency Department evaluation for heavy menstrual bleeding (HMB).
– 2019 Special Symposium on Women and Their Periods Participants