News

The Sibling Journey

Sibling relationships can be the longest, strongest and at times the most complex relationships in a family. During the formative years, siblings share life’s journey and all it brings. What is it like to be the sibling of someone with...

Read More >

Ask the Adults: Advice for the Younger FA Generation

Our son is significantly smaller than his same-age peers. We know that this will become more of an issue for him socially as he gets older. Any advice? The more you accept yourself, the more others will accept you. We...

Read More >

Let’s Meet at the Porch?

Our only child, Marina, is a lovely, sweet girl who loves going to the beach and riding bicycles (especially at her grandparents’ farm). She is 11 years old and we are so thankful she is doing well. Just after her...

Read More >

Caregiver Job Description

Caregiver Position Description Position Summary: The Caregiver cares for the patient’s medical, physical, emotional, spiritual, mental, social-emotional, financial, organizational, and dietary needs. Reporting to: This position reports to the patient, medical staff, the patient’s mother, other family members, friends, acquaintances, and the...

Read More >

Ten of the Best Things about FA Family Camp

Every summer, families affected by FA from come together at Camp Sunshine in Casco, Maine for five days. The Family Meeting (or Family Camp) is a special event that allows families to hear from expert FA researchers and physicians, to attend support...

Read More >

No Longer an Orphan

Introduction My subject was born an orphan in 1927. With no known relatives and no connections to a wider community, what followed were 60 years of abandonment. In 1985, one courageous family decided that this isolation had gone on long...

Read More >