In the Room: Navigating the Space Between Adjustment and Acceptance in the Context of a Genetic Diagnosis

Mary-Frances is a board certified, licensed genetic counselor, with a private practice, Listening, Reflecting, Healing, where she provides supportive genetic counseling and bereavement services. Over the past 15 years, she has supported many families helping them adjust to a diagnosis and step forward on their journey. Her belief is that individuals and families need a place to process their emotions associated with their genetic issues. Mary-Frances worked as a prenatal genetic counselor in the Maternal Fetal Medicine department at Newton Wellesley and Brigham and Women’s Hospitals and as a consultant with Genome Medical providing counseling for those with family histories or diagnoses of cancer and other genetic conditions. Earlier in her career, she was the Executive Director for NERGG, Inc., The New England Regional Genetics Group. Mary-Frances attended the University of Rochester, graduating with a BS in Molecular Genetics, and Sarah Lawrence College where she earned a MS in Human Genetics. She was a prior board member of the National Society of Genetic Counselors.

Inspired by her father, a doctor and surgeon to an underserved rural community, Dr. Tasha Faruqui joined the National Health Service Corps following her graduation from medical school. Her plan was to take over her father’s practice once her commitment was complete, but this was diverted when her second daughter, Soraya, was born with a rare, little-known genetic disorder that remains largely a mystery thirteen years later. Tasha’s focus then shifted to pediatrics, with particular attention to advocacy and support for parents of medically complex children and those with a limited life expectancy. Today, she regularly brings her dynamic message of fierce and loving hope to medical students at Cincinnati Children’s Hospital, the top pediatric medical facility in the country, Make-A-Wish events, and her Instagram community.

Joanne is the mother of two girls, the oldest of whom has the rare disease MPS IIIA/Sanfilippo Syndrome, Joanne completed nursing school after her daughter's diagnosis, receiving her Bachelors of Science in Nursing from Plymouth State University, Plymouth NH. She enjoyed community liaison work with home care providers of adults with special needs up until her own daughter's care became increasingly more involved. In addition to serving on the Boards of New England Regional Genetics Group (NERGG) and Adaptive Sports Partners through 2024, she has found great purpose in volunteer work advocating for policy improvements and change in Washington DC with the National MPS Society. In her free time, Joanne seeks balance and refuge with yoga, hiking and performing as an ensemble Soprano vocalist with the Pemigewasset Choral Society. When not blogging for CPN, Joanne enjoys sharing offerings on her personal Blog Folding Origami for God. She resides in New Hampshire with her two daughters, Sasha and Nika, her husband Mike and her yellow lab Suki.

Naomi is a Life Doula, supporting parents and family caregivers as they navigate the complex systems that come with a life altering medical diagnosis. She is also the author of And God Remembered Noah: A mother's heart-opening journey through 22 weeks in the NICU. As the mother of a micro-preemie given a poor prognosis who now lives with medical complexities, Naomi models what a good quality of life can be like. She enjoys getting lost in nature and taking long deep breaths on her yoga mat.