Spotlight Von Willebrand Disease
Nancy Foti: Inaugural Youth Staff, Focused Observer, Champion Volunteer

By Cindy Connelly

Nancy Foti is anything but your typical 21-year-old. There is a mature circumspection and wisdom about her as I caught up with her emerging from COVID quarantine. She had recently been exposed to the disease while visiting her aunt in New York State. As the rest of us are breathing a sigh of relief, getting our vaccines and looking forward to a re-opening of life, Nancy was “visit-bound”. She was also doing double-duty as a tutor for her 8th, 10th, and 12th grade niece and nephews. As I regard this a full-time job, I was delighted she agreed to talk about how she found her way to VWD Connect Foundation and what this involvement has meant.

 

As it turns out her narrative is really smart, like the woman herself. Looking to polish up her resumé for college applications, she sought volunteer experiences that would impress the gatekeepers in admissions. In 2017 her Wellington, Florida high school “bestie” encouraged her to think about Von Willebrand Disease because the first national patient-centered conference was being planned and help was clearly needed to pull off a first-class effort involving hundreds of moving parts. It was an “all hands-on deck” moment and project management details to deal with every day. Foti jumped at the opportunity.

 

Nancy found herself in the excitement of pulling off this “first ever” event.  It would attract patients and companions from around the country, along with hematologists, nurse specialists, social workers, a geneticist, physical therapist, psychologist, health educators and volunteers. The atmosphere was kinetic and contagious. She stuffed envelopes, packed up gift bags, organized patient folders and did the odd jobs required to pull off this first major in-person conference at the PGA National in Palm Beach Gardens, Florida. More importantly, with eyes and ears alert and open, she became a sponge for knowledge; about Type 3/Severe VWD and the people who lived with it.

 

Being in the Wellington office proved energizing and electric. She began absorbing the impact of Severe VWD; both in a macro as well as a granular sense.  In the busy setting she could overhear conversations about travel worries, cautions from anxious patients and parents and concerns about medical support during the conference. She began to fully comprehend and sympathize with the scores of unpredictable issues people with Type 3/Severe VWD contend with on a daily basis. Her learning had begun in earnest.

 

When the conference arrived her duties and role escalated. She was officially appointed part of a newly formed 7-member “Youth Staff” and an entrenched part of the welcoming committee whirlwind. Now she was meeting and greeting patients first-hand. She was coordinating conversations with the conference Co-Directors and patients, facilitating smaller get-togethers among medical support experts, and hustling translators into place as needed during educational sessions. I liken it to a utility infielder.

 

The fact was, Nancy Foti was hooked. “I could not believe how much this conference meant to people who came. It was life changing for a lot of them, especially older [patients] with the disease. It was like they had never met anyone else with [Type 3 VWD] before and it was amazing.”

 

In the next years everything would change and Foti found herself part of the evolution. The formation of the VWD Connect Foundation Inc. was in direct response to the success of this first conference and patients’ desire for more connection, education and support.

 

Nancy’s role and responsibilities also matured. At the conferences in 2018 and 2019 her advice was sought around youth and teen programming. She sat in meetings with PGA National when initial plans were being discussed and was called on to serve as an administrative “check and balance” as the conferences became more complicated, complex and robust.

 

Nancy was not only a participant of the growth, but a keen observer of it. As she notes, “it was so rewarding to see the [organization] evolve through the accumulation of so much data, patient surveys, international research and more. I knew the [organization] was eager to see its findings on a bigger stage.” Foti knew she was part of something larger than herself.

 

It was clear Foti had become emotionally involved with patients through the conferences and felt a kinship with their individual and collective stories. Familiar faces had become dear to her and as she tells it, so were transformative reunions.

 

In 2019 Foti has particular memories of witnessing several emotional and deeply personal stories. One was a panel in which Curtis Weimann shared the tribulations and triumphs of his life story. Earlier outside registration she recalls being particularly moved by the reunion of Curtis and another man, who had become very close friends through the conferences. “I believe these experiences are going to encourage me to engage with other bleeding organizations when I return home to Florida, and to certainly keep up my involvement with VWD Connect Foundation,” she asserts. “Once you have seen the impact on these patients you realize the power of these conferences. They have a way of sticking with me.”

 

Foti has seen a lot in her 21 years. Yet it feels like she’s just about to break out in the world. A serious young woman, she’s a recent graduate of the University of South Florida and majored in Environmental Science and Policy. With this degree she has many options, including public administration, private environmental consulting, or as she delights, becoming a National Park Ranger.

 

Asked for three adjectives to describe VWD Connect Foundation today she does not hesitate for a nano-second: “amazing, strong and moving. I’m so grateful that I can be a part of it.”

 

Today, more than 20 young adults aged 18-25 comprise the Youth Staff at VWD Connect Foundation.  Nancy Foti was a trailblazer.

 

Cindy Connelly is a marketing strategist and communications writer living in Boston.

To find out how you can be a part of VWD Connect Foundation, please visit our Donation page and consider becoming a volunteer.

Spotlight Von Willebrand Disease
Nancy Foti: Inaugural Youth Staff, Focused Observer, Champion Volunteer

By Cindy Connelly

Nancy Foti is anything but your typical 21-year-old. There is a mature circumspection and wisdom about her as I caught up with her emerging from COVID quarantine. She had recently been exposed to the disease while visiting her aunt in New York State. As the rest of us are breathing a sigh of relief, getting our vaccines and looking forward to a re-opening of life, Nancy was “visit-bound”. She was also doing double-duty as a tutor for her 8th, 10th, and 12th grade niece and nephews. As I regard this a full-time job, I was delighted she agreed to talk about how she found her way to VWD Connect Foundation and what this involvement has meant.

 

As it turns out her narrative is really smart, like the woman herself. Looking to polish up her resumé for college applications, she sought volunteer experiences that would impress the gatekeepers in admissions. In 2017 her Wellington, Florida high school “bestie” encouraged her to think about Von Willebrand Disease because the first national patient-centered conference was being planned and help was clearly needed to pull off a first-class effort involving hundreds of moving parts. It was an “all hands-on deck” moment and project management details to deal with every day. Foti jumped at the opportunity.

 

Nancy found herself in the excitement of pulling off this “first ever” event.  It would attract patients and companions from around the country, along with hematologists, nurse specialists, social workers, a geneticist, physical therapist, psychologist, health educators and volunteers. The atmosphere was kinetic and contagious. She stuffed envelopes, packed up gift bags, organized patient folders and did the odd jobs required to pull off this first major in-person conference at the PGA National in Palm Beach Gardens, Florida. More importantly, with eyes and ears alert and open, she became a sponge for knowledge; about Type 3/Severe VWD and the people who lived with it.

 

Being in the Wellington office proved energizing and electric. She began absorbing the impact of Severe VWD; both in a macro as well as a granular sense.  In the busy setting she could overhear conversations about travel worries, cautions from anxious patients and parents and concerns about medical support during the conference. She began to fully comprehend and sympathize with the scores of unpredictable issues people with Type 3/Severe VWD contend with on a daily basis. Her learning had begun in earnest.

 

When the conference arrived her duties and role escalated. She was officially appointed part of a newly formed 7-member “Youth Staff” and an entrenched part of the welcoming committee whirlwind. Now she was meeting and greeting patients first-hand. She was coordinating conversations with the conference Co-Directors and patients, facilitating smaller get-togethers among medical support experts, and hustling translators into place as needed during educational sessions. I liken it to a utility infielder.

 

The fact was, Nancy Foti was hooked. “I could not believe how much this conference meant to people who came. It was life changing for a lot of them, especially older [patients] with the disease. It was like they had never met anyone else with [Type 3 VWD] before and it was amazing.”

 

In the next years everything would change and Foti found herself part of the evolution. The formation of the VWD Connect Foundation Inc. was in direct response to the success of this first conference and patients’ desire for more connection, education and support.

 

Nancy’s role and responsibilities also matured. At the conferences in 2018 and 2019 her advice was sought around youth and teen programming. She sat in meetings with PGA National when initial plans were being discussed and was called on to serve as an administrative “check and balance” as the conferences became more complicated, complex and robust.

 

Nancy was not only a participant of the growth, but a keen observer of it. As she notes, “it was so rewarding to see the [organization] evolve through the accumulation of so much data, patient surveys, international research and more. I knew the [organization] was eager to see its findings on a bigger stage.” Foti knew she was part of something larger than herself.

 

It was clear Foti had become emotionally involved with patients through the conferences and felt a kinship with their individual and collective stories. Familiar faces had become dear to her and as she tells it, so were transformative reunions.

 

In 2019 Foti has particular memories of witnessing several emotional and deeply personal stories. One was a panel in which Curtis Weimann shared the tribulations and triumphs of his life story. Earlier outside registration she recalls being particularly moved by the reunion of Curtis and another man, who had become very close friends through the conferences. “I believe these experiences are going to encourage me to engage with other bleeding organizations when I return home to Florida, and to certainly keep up my involvement with VWD Connect Foundation,” she asserts. “Once you have seen the impact on these patients you realize the power of these conferences. They have a way of sticking with me.”

 

Foti has seen a lot in her 21 years. Yet it feels like she’s just about to break out in the world. A serious young woman, she’s a recent graduate of the University of South Florida and majored in Environmental Science and Policy. With this degree she has many options, including public administration, private environmental consulting, or as she delights, becoming a National Park Ranger.

 

Asked for three adjectives to describe VWD Connect Foundation today she does not hesitate for a nano-second: “amazing, strong and moving. I’m so grateful that I can be a part of it.”

 

Today, more than 20 young adults aged 18-25 comprise the Youth Staff at VWD Connect Foundation.  Nancy Foti was a trailblazer.

 

Cindy Connelly is a marketing strategist and communications writer living in Boston.

To find out how you can be a part of VWD Connect Foundation, please visit our Donation page and consider becoming a volunteer.