Lauren lives in the Pacific Northwest with her husband, two kiddos, and a very feisty cat named Calliope. She became involved with CLOVES Syndrome Community shortly after the birth of her daughter, Kiki, in 2015. Lauren is the author of Four Leaf Clovers, a book about life with differences for young children written in collaboration with CLOVES Syndrome Community. When she’s not busy with mom life, she publishes adult fiction under the name Elle Beauregard.
Robynn lives in Colorado with her husband and daughter Ellena, who was born with CLOVES in 2007. She is a stay at home mom who has been fundraising yearly for CLOVES, with Ellena, and their Loaves for CLOVES event. The CLOVES Syndrome Community has been a great place for them to funnel their interest in helping others with CLOVES.
Jenny Padilla is currently a stay at home mom, but was previously a NICU nurse. Her son Victor is almost six years old. She was able to attend the conference in Boston, when Victor was just 6 months old and was amazed to meet other children, teens and an adult with CLOVES. Jenny quickly realized that she could help support the organization through fundraising and by raising awareness. Jenny has organized many small and large fundraisers and has been a great resource for other families who want to participate that way. Jenny says that her family has used CLOVES Community at times when they needed emotional support or help navigating life with a sick child. Jenny says that she couldn’t imagine life without this wonderful community, and their support towards all involved. This is the primary reason she has chosen to join the Family Advisory Council.
Kai was diagnosed at birth with Klippel Trenaunay Syndrome, and has since had physicians suggest an updated diagnosis of CLOVES. He attended his first support conference in 2012 and quickly realized how important the community is for learning about this disease and how to manage it. He has participated in several focus groups with pharma companies to help them learn about the unique needs and challenges that CLOVES patients face. His background in biotech has been enormously helpful for digesting scientific literature and communicating with medical professionals and he hopes to be able to help empower the CLOVES community members to do the same. Kai recently moved to the Seattle area from the San Francisco Bay Area and is settling into his new home and exploring the Pacific Northwest.
Diagnosed with CLOVES at age 14, Lindsay has been involved with CLOVES Syndrome Community ever since. Now several months out from graduating from the University of Pittsburgh, she works as a Medical Social Worker in Pittsburgh, PA. Lindsay is dedicated to spreading awareness about CLOVES and advocating for this syndrome and for those affected. She is dedicated to making connections with other patients and families and values the relationships made within CLOVES Syndrome Community.
Lindsey Johnson Edwards
Lindsey Johnson Edwards is a Master’s student at Dallas Theological Seminary. Lindsey was diagnosed with Klippel Trenaunay Syndrome at birth before she was re-diagnosed with CLOVES Syndrome as a teenager. Because of her life with CLOVES Syndrome, Lindsey has an interest in researching and writing about suffering, disability, and human flourishing. She hopes to earn her PhD in Theology and venture into researching theological bioethics. In the meantime, Lindsey is excited to advocate for this community and promote the flourishing of CLOVES patients and caregivers.
Learn more about the Family Advisory Council here.