Family Advisory Council Members

Lauren Beauregard

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 Kuhns

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.

Jennifer Padilla

Jenny Padilla is currently a NICU nurse. Her son Victor is almost 9 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 adults 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 Rehder

Kai was diagnosed at birth with Klippel Trenaunay Syndrome, and has since had physicians suggest an updated diagnosis of CLOVES Syndrome. After attending several KTS and CLOVES Syndrome community meetings, he realized how important connecting with the community is for learning how to advocate for his own health. He hopes to use his background in biotech as well as his own experiences in managing his own mental and physical health to help others in the community navigate the challenges of CLOVES Syndrome. In his spare time, you can find Kai exploring the foodie scene or playing disabled hockey with the Seattle Kraken Sled Hockey team. Kai lives in the Seattle area with his cat, Triscuit.

Lindsay Weslow

Lindsay was diagnosed with CLOVES Syndrome around age 14 and has been involved with CLOVES Syndrome Community ever since. She works as a transplant 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 PhD student at Southern Methodist University in Dallas, Texas. 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 suffering, disability, and human flourishing. Her dissertation will focus on “quality of life” care and ethics. What fuels her research is her desire to improve the “quality of life” of CLOVES patients’ specifically and rare disease patients broadly. Because of this desire, Lindsey also volunteers at Children’s Medical Center in Dallas, works with research and support groups in the rare disease community, and participates in legislative advocacy for the rare disease community.

Learn more about the Family Advisory Council here.