Our Good Stuff

Being persistently positive in the face of rare disease.

For people of any age who live with a rare disease, staying positive in the face of relentless daily challenges is an admirable and worthwhile goal.

The Challenge

Cultivating Optimism in the Face of Rare Disease

Gaining a more optimistic disposition begins with making positivity a habit. Additionally, positivity may serve to protect mental health. But it’s not always easy. A little help can go a long way.

The Strategy

A Tool to Improve Quality of Life

The Our Good Stuff TM (OGS), being persistently positive in the face of rare disease, helps patients (and the families who care for them) appreciate the victories—big and small—every day. OGSTM reinforces optimism as an achievable choice.

The Concept

The OGSTM program is designed to become a daily habit easily for any individual or family. It was inspired by the Carter family in the UK and their experiences with the daily challenges of living with a rare disease. Their “good stuff” helps them stay optimistic and celebrate the positive moments they share together. Said one Carter family member, “every year has bad things, but it doesn’t make it a bad year.”

The Approach

Three Easy Ways to Capture Your Good Stuff

A patient and his or her family make a commitment to capture regularly good things that they observe or happen around them. They choose any container to store their “good stuff” — it doesn’t matter as long as it can be stuffed full of good thoughts.

  1. REFLECT. Record one or more positive moments that happened that day. It can be as simple as a happy thought (i.e., how wonderful the sunshine feels) or an accomplishment (i.e., a good grade on a test)

  2. COLLECT. Place the notes into the container, and watch as it fills with “good stuff” over time. Keep the container somewhere visible to be reminded that there is “good stuff” to be thankful for.

  3. SHARE. Celebrate the small victories! Some families make a habit of emptying the container every week or month, or at family gatherings or holidays, to read through their notes and be reminded of the positive moments.

The program is a way to focus beyond the disease – to moments that matter.

The Execution

Printed Program and Starter Kit

Digital App

The initial HCP mailer provided everything practitioners and their teams needed to help patients get started. The Our Good StuffTM jar was displayed in HCP offices and motivated patients to get involved.

In addition, patients or family members could request their own starter kits directly from Amicus Patient and Professional Advocacy.

OGSTM is available to any patient, any family living with any rare disease

The Result

A World of Positive Outcomes

The OGSTM program has received overwhelmingly positive responses from patients and their families, the medical community, patient advocacy organizations, and community groups.

The OGSTM Jar became a core activity at the National Fabry Disease Foundation week at Victory Junction, a not-for-profit camp for children with serious medical conditions.

To date, we have received more than 2,500 requests for starter kits. Dozens of patient advocacy organizations in 35 countries have distributed OGSTM kits as important components of family support.

Patient Advocacy Organizations in 10 countries have distributed OGSTM kits as important components of family support.

Good moments occur in disparate places, from home to school to the internet. Oftentimes, capturing a thought and tossing it into the OGSTM jar isn’t possible. Therefore, the OGSTM app, available in the App Store, transformed OGSTM from an activity to a concept. It was designed for both personal and community use, and made continuous engagement possible.

In addition to providing a hub to collect positive thoughts, subscribers can sign up for clinical findings on positivity, resources, and all forms of good stuff. As the initiative expands, new features will be added