We were so pleased to have Dr. Meg Simione, Ph.D., CCC-SLP (MGH) and Assistant Professor of Pediatrics at Harvard Medical School share two web seminars on MLIV feeding during the summer of 2024.

Dr. Simione is an integral part of the MLIV prospective natural history study currently taking place at MGH. She has seen over 15 children with MLIV over the past two years and she works with many other rare disease communities. As a clinician, she cares for children with pediatric feeding disorders and has developed and directed clinical programs and quality improvement initiatives to improve care for these children. Dr. Simione’s research has been funded by the National Institutes of Health (NIH) and foundations. She has authored numerous publications and has presented nationally and internationally.

The June 5, 2024 presentation focused on what we have learned about MLIV feeding, supporting safe and enjoyable feeding, toothbrushing, and saliva management.

Passcode for the June 5 recording: Ne&z4Qh^

On July 23, Dr. Simione spoke with parents about different kinds of tube feeding, family feelings about moving to tube feeding, and developing a shared decision-making tool for deciding when to start tube feeding.  This interactive presentation took on a topic that is often quite difficult for families to consider but, as everyone who joined realized, is so important to learn about.

Passcode for the July 23 recording: 0#naDawD