Grief Support Resources
Jessica Shriver, MA Theology, MS Bioethics is a patient advocate and bioethicist specializing in care and advocacy issues that impact rare disease patients and their families. 

Jessica earned a B.A. in Biochemistry at Smith College in Massachusetts, and worked for three years in biomedical research, studying effects of exercise on human and mouse muscle reconstruction. Jessica attended seminary at Gordon-Conwell Theological Seminary in Hamilton-Wenham, Massachusetts where she received a Master of Arts in Theology. Jessica earned a Master of Science in Bioethics from Albany Medical College, where her research focused on false accusations of medical child abuse. 

In addition to her work with RNE, Jessica works as a patient advocate consultant, and has worked with the national non-profit organization MitoAction in their Advocacy Task Force, and Grief Support group. Jessica also works with the Rhode Island-based Anglican Church of the Way, in their Special Needs Ministry. Her research interests include ethical issues in the Rare Diseases community, the ethics of pediatric medical decision-making, false medical child abuse accusations, and pediatric palliative and end-of-life care.

Jessica’s life was impacted by rare disease when her husband and two children were diagnosed with a combination of rare genetic disorders, and her oldest child died of progressive medical problems at age five. 

Becky Nolan is a widowed mom with a young daughter. She lost her husband suddenly at the age of 29, leaving her with a one year old child to raise on her own. She lives in Connecticut, where she met, married, and lost the man she is still proud to call her husband. She says that every day she struggles, every day she learns, and every day she is grateful for the time she had with him, and for the little girl he gave her before he left. Becky has found comfort and healing in writing. She has found purpose in sharing her story, knowing that so many others have been through it too, and knowing that everyone has experienced loss and struggle. Becky says that words can be healing when they come from that deeply honest place within the soul and knows grief is too lonely a road to walk alone, so she aims to give comfort and company on that lonely road.
Becky is graciously allowing RNE to offer her work as a resource for those who need and want it by connecting to her blog.

A blog written by Becky Nolan

Sample: "I Went to a Funeral, and I Never Went Home"

Suzie Kolber

Choosing the Perfect Words of Condolences
Listening, Reflecting, Healing: Supportive Genetic Counseling:

Supportive Genetic Counseling is intended to complement the more traditional genetic counseling that is offered in medical centers. The focus is on the emotional responses patients and/or parents may have surrounding rare disease.  Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.