October Town Hall
In our October Town Hall, in honor of EB Awareness Week, we gathered to discuss The Plunge for Elodie! The Plunge offers a meaningful way to raise awareness, rally your community, and support the fight for a cure. It’s a great opportunity for anyone to get involved, whether in a big or small way. To learn more, we heard from several Plunge leaders from across the globe about how they got involved and made the Plunge their own.
Our speakers:
Emily Kubik
Emily is a Plunge for Elodie Co-Chair and Elodie's mom, the inspiration behind this monumental movement! Emily is also an EBRP board member and Treasurer, as well as a fierce EB advocate.
Kristan Khtikian
Kristan is a Co-Chair of the Plunge for Elodie and one of the event's initial creators back in 2018. When her childhood best friend's daughter, Elodie, was born with RDEB, Kristan jumped into action to help find a cure and has been plunging into freezing water ever since!
Nathan Burmeister
Nathan is a dedicated advocate who has travelled the world to make sure his son, Jacob, receives the very best care. A few years ago, he brought the Plunge to Melbourne, raising vital funds and awareness for EB in Australia, and he’s since made the event uniquely his own.
Stephanie Luciano-Novo
Stephanie is a passionate EB ambassador whose journey began after meeting Deanna Molinaro at an event in Seattle of 2023. Inspired by Deanna and moved by EBRP’s mission, she went on to host the very first Plunge in Los Angeles: a joyful, backyard celebration that made a big splash!
Allison Bolshagettigan
Allison is the Director of Programs at EBRP. In this role, she oversees both their research and community event initiatives. Allison's passion for EBRP's mission has taken her to 8 Plunges around the country so far, and she's not stopping anytime soon!
Our speakers:
Emily Kubik
Emily is a Plunge for Elodie Co-Chair and Elodie's mom, the inspiration behind this monumental movement! Emily is also an EBRP board member and Treasurer, as well as a fierce EB advocate.
Kristan Khtikian
Kristan is a Co-Chair of the Plunge for Elodie and one of the event's initial creators back in 2018. When her childhood best friend's daughter, Elodie, was born with RDEB, Kristan jumped into action to help find a cure and has been plunging into freezing water ever since!
Nathan Burmeister
Nathan is a dedicated advocate who has travelled the world to make sure his son, Jacob, receives the very best care. A few years ago, he brought the Plunge to Melbourne, raising vital funds and awareness for EB in Australia, and he’s since made the event uniquely his own.
Stephanie Luciano-Novo
Stephanie is a passionate EB ambassador whose journey began after meeting Deanna Molinaro at an event in Seattle of 2023. Inspired by Deanna and moved by EBRP’s mission, she went on to host the very first Plunge in Los Angeles: a joyful, backyard celebration that made a big splash!
Allison Bolshagettigan
Allison is the Director of Programs at EBRP. In this role, she oversees both their research and community event initiatives. Allison's passion for EBRP's mission has taken her to 8 Plunges around the country so far, and she's not stopping anytime soon!
October Town Hall Summary
We kicked off this month’s Town Hall by hearing from Emily Kubik, mom to Elodie, who shared how her closest friends felt inspired to support Emily and Elodie in any way they could—leading them to create the Plunge for Elodie just nine short years ago. What began as a small local event has now grown into a global movement, with over 20 plunges taking place worldwide.
Emily’s hope is that the Plunge continues to grow, increasing awareness and raising critical funds for EB research.
Next, we heard from Kristin, who spoke about her involvement in the creation of the first Plunge and her desire to help her best friend by doing something bold and different. She and 10 of her closest friends decided to “make a splash” and start the event. Kristin highlighted the creative strategies she has used to grow the Plunge each year—inviting university sports teams, engaging local news outlets, securing innovative sponsorships, and making the event truly fun and memorable.
Nathan then shared how he brought the Plunge “down under.” As the father of Jacob, who lives with EB, Nathan spoke about Jacob’s journey and how he personalized the event for his community. He emphasized the power of rallying your village and how meaningful it has been to see friends and neighbors come together (in superhero costumes) to plunge in Jacob’s honor.
Lastly, we heard from Stephanie, who described how she adapted her Plunge last year during the LA wildfires, finding new ways to engage her community even in the midst of hardship.
Emily’s hope is that the Plunge continues to grow, increasing awareness and raising critical funds for EB research.
Next, we heard from Kristin, who spoke about her involvement in the creation of the first Plunge and her desire to help her best friend by doing something bold and different. She and 10 of her closest friends decided to “make a splash” and start the event. Kristin highlighted the creative strategies she has used to grow the Plunge each year—inviting university sports teams, engaging local news outlets, securing innovative sponsorships, and making the event truly fun and memorable.
Nathan then shared how he brought the Plunge “down under.” As the father of Jacob, who lives with EB, Nathan spoke about Jacob’s journey and how he personalized the event for his community. He emphasized the power of rallying your village and how meaningful it has been to see friends and neighbors come together (in superhero costumes) to plunge in Jacob’s honor.
Lastly, we heard from Stephanie, who described how she adapted her Plunge last year during the LA wildfires, finding new ways to engage her community even in the midst of hardship.
EBRP live Town Halls
Our monthly Live Town Halls help drive research and awareness with informative discussions led by trusted specialists and advocates in the EB space. Topics include current research, clinical trials, caring for loved ones with EB, and more. Town Halls are open to anyone interested in learning more about EB and the future of EB treatment and care. Check out more of our Town Halls here.
To register for our next Live Town Hall, click here.
To register for our next Live Town Hall, click here.
