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DC Leukodystrophy Research Trip Update(UBTF)

Author
Katie Canning
Published
Thu 27 Jun 2024
Episode Link
https://shows.acast.com/double-rare-a-mothers-path-with-two-rare-diseases/episodes/dc-leukodystrophy-research-trip-updateubtf

During our trip to Washington, DC for medical research related to my son's Leukodystrophy gene mutation (UBTF), we stayed at the Ronald McDonald House for accommodations. In addition to focusing on medical appointments and research, we took the opportunity to visit family members, including his grandparents (nono and yaya) and aunt. We also enjoyed attending a lively Greek festival together, immersing ourselves in the cultural experience. The trip was rounded off with a pleasant brunch shared with our relatives, combining both the pursuit of medical insights and cherished family moments in our nation's capital.

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