August Town Hall
In our August Town Hall, we brought our community together for a fun and inspiring discussion focused on creative ways to raise funds and awareness for EB, engaging your local community, and driving large-scale impact.
This Town Hall reminded us that small actions can lead to big impact, and that anyone can get involved to create a butterfly effect for EB.
Our speakers:
Annie McKenzie
Annie co-founded Pursuit for Patterson after her son Patterson was diagnosed with Recessive Dystrophic EB. Through a series of initiatives and creative events, their goal is to raise awareness, support other EB families, and help drive critical research forward. Annie is a fierce advocate, driven by hope and a deep belief that together, we can change the future for those living with EB.
Laura Goe
Laura is the Executive Director of Elliana's Army, a nonprofit dedicated to raising awareness and funds for EB. Elliana's Army is named after Elliana Campbell, a baby who passed away at 10 months old from Junctional EB, and whose story went viral on social media, bringing a ton of awareness to EB. Laura and Elliana's Army organize fundraisers across the country and the world to help EB families with small gestures of support.
The Rippole Family
Damian and Alison and their children Tyler, Sammy, Maya, and Julia are avid travelers, lovers of live music and enjoy rallying around causes that are important to them. Initially through the awareness created by Pearl Jam about EB and EBRP’s efforts to eradicate the condition, in 2014 the Rippole family began their journey with us and have become mini-ambassadors of the cause through a series of fun and unique fundraisers. They strongly value the life lessons and family togetherness that their journey with the EB community has enabled, and they are optimistic that the research, FDA approvals, and momentum will help EB patients manage their condition and will ultimately find a cure for EB, once and for all.
This Town Hall reminded us that small actions can lead to big impact, and that anyone can get involved to create a butterfly effect for EB.
Our speakers:
Annie McKenzie
Annie co-founded Pursuit for Patterson after her son Patterson was diagnosed with Recessive Dystrophic EB. Through a series of initiatives and creative events, their goal is to raise awareness, support other EB families, and help drive critical research forward. Annie is a fierce advocate, driven by hope and a deep belief that together, we can change the future for those living with EB.
Laura Goe
Laura is the Executive Director of Elliana's Army, a nonprofit dedicated to raising awareness and funds for EB. Elliana's Army is named after Elliana Campbell, a baby who passed away at 10 months old from Junctional EB, and whose story went viral on social media, bringing a ton of awareness to EB. Laura and Elliana's Army organize fundraisers across the country and the world to help EB families with small gestures of support.
The Rippole Family
Damian and Alison and their children Tyler, Sammy, Maya, and Julia are avid travelers, lovers of live music and enjoy rallying around causes that are important to them. Initially through the awareness created by Pearl Jam about EB and EBRP’s efforts to eradicate the condition, in 2014 the Rippole family began their journey with us and have become mini-ambassadors of the cause through a series of fun and unique fundraisers. They strongly value the life lessons and family togetherness that their journey with the EB community has enabled, and they are optimistic that the research, FDA approvals, and momentum will help EB patients manage their condition and will ultimately find a cure for EB, once and for all.
august Town Hall Summary
This month’s Town Hall began with an overview from Allison Bolshagettigan on EBRP’s EB Active program. She discussed the personalized resources that the EBRP team can provide to assist with creating a fun and successful event, such as planning guides, email templates, social media support, 1:1 calls, and more.
The event leaders who joined the Town Hall as speakers have a wealth of knowledge and and experience in community event planning and shared examples of creative fundraisers they’ve hosted, advice on how they keep their supporters engaged, tips for event planning, and powerful experiences they’ve had in working with the EB community in a variety of ways.
Annie McKenzie shared her family’s journey following her son Patterson’s diagnosis with RDEB and the founding of Pursuit for Patterson. She discussed the variety of events they’ve hosted (from chili cook-offs to survival football drafts to pub crawls and more!), how they discovered what resonated most in their community, and the importance of creativity in sustaining momentum. She also offered advice for other families considering hosting their own fundraisers. ”Every event, big or small, has really helped us build our community, raise awareness, and support the EB community. So if you’re thinking of hosting something, just know it doesn’t have to be perfect, it just needs to be personal. I would say never dismiss the power of people, and there’s just something so joyful and so transformative about that human connection, especially in fundraising.”
Laura Goe, Executive Director of Elliana’s Army, spoke about how the powerful and viral story of Elliana Campbell, who recently passed away after being born with Junction EB, inspired her to rally an “army” of support. She highlighted Elliana’s Army’s wide range of fundraising efforts, including the Hope for Healing Memorial Walk, which came together in just 6 weeks and successfully integrated both in-person and virtual participation. Laura emphasized the power of community engagement and provided practical tips and lessons learned for planning impactful events. She also offered Elliana’s Army’s services to anyone who wants to get involved but keeps extra time and help to plan a fundraiser.
Damian and Alison Rippole, parents of four and longtime supporters, reflected on their family’s decade-long involvement with EBRP. From raffles and lemonade stands to wine tastings to online slime stores, Plunges, and more, they and their kids, Tyler, Sammy, Maya, and Julia, described how their initiatives have both raised significant funds and engaged younger generations. They underscored the importance of building meaningful connections and finding ways for the whole family to contribute.
If you are interested in hosting an EB Active event, please don’t hesitate to reach out to Allison Bolshagettigan at [email protected] to learn more about how EBRP can support you!
The event leaders who joined the Town Hall as speakers have a wealth of knowledge and and experience in community event planning and shared examples of creative fundraisers they’ve hosted, advice on how they keep their supporters engaged, tips for event planning, and powerful experiences they’ve had in working with the EB community in a variety of ways.
Annie McKenzie shared her family’s journey following her son Patterson’s diagnosis with RDEB and the founding of Pursuit for Patterson. She discussed the variety of events they’ve hosted (from chili cook-offs to survival football drafts to pub crawls and more!), how they discovered what resonated most in their community, and the importance of creativity in sustaining momentum. She also offered advice for other families considering hosting their own fundraisers. ”Every event, big or small, has really helped us build our community, raise awareness, and support the EB community. So if you’re thinking of hosting something, just know it doesn’t have to be perfect, it just needs to be personal. I would say never dismiss the power of people, and there’s just something so joyful and so transformative about that human connection, especially in fundraising.”
Laura Goe, Executive Director of Elliana’s Army, spoke about how the powerful and viral story of Elliana Campbell, who recently passed away after being born with Junction EB, inspired her to rally an “army” of support. She highlighted Elliana’s Army’s wide range of fundraising efforts, including the Hope for Healing Memorial Walk, which came together in just 6 weeks and successfully integrated both in-person and virtual participation. Laura emphasized the power of community engagement and provided practical tips and lessons learned for planning impactful events. She also offered Elliana’s Army’s services to anyone who wants to get involved but keeps extra time and help to plan a fundraiser.
Damian and Alison Rippole, parents of four and longtime supporters, reflected on their family’s decade-long involvement with EBRP. From raffles and lemonade stands to wine tastings to online slime stores, Plunges, and more, they and their kids, Tyler, Sammy, Maya, and Julia, described how their initiatives have both raised significant funds and engaged younger generations. They underscored the importance of building meaningful connections and finding ways for the whole family to contribute.
If you are interested in hosting an EB Active event, please don’t hesitate to reach out to Allison Bolshagettigan at [email protected] to learn more about how EBRP can support you!
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.
