Clarissa.With.Sord

I don’t really know what to say. The friends I made, the people I met, and the nature of the summit was phenomenal. Thank you for organizing this life-changing event and bringing the brightest patient and researcher minds together. Thank you to for welcoming me with open arms, and being a space where I can simply “be”. Thank you to my SORD gang- and . It was wonderful to meet you all in person!! Now that the summit is over, I am willing the seasons to change faster so we can meet again! ❤️

Do you have CMT-SORD? Would you like to share your journey through diagnosis and living with CMT? Clarissa Lesky (that’s me 🥰) of the UCLA Lemelson Anthropological Honors program is conducting a study this summer!A lot of data around CMT is limited to the clinic- we want to add to the conversation by giving us a voice
We are asking to conduct at least three one hour interviews via Zoom. Interviews will take place from July to September of 2024 at times that are convenient for you! (The meetings will be recorded and all of your personal information will be protected.) If the opportunity arises where we may be able to meet in-person, I would conduct observations either you, your family, and/or friends as appropriate. If you are interested in participating, please contact [email protected]