PATIENT ADVOCACY

Shine Your Searchlight 2026: A Community-Driven Campaign

We’re excited to officially kick off the 4th annual Shine Your Searchlight ✨ campaign, a community-wide effort taking place throughout February in honor of Rare Disease Awareness Month.

Shine Your Searchlight is a collaborative outreach campaign designed to support individuals, families, and caregivers affected by rare genetic neurodevelopmental conditions—while strengthening long-term research participation across the Simons Searchlight community. This year’s campaign is made possible through partnership with 25 patient advocacy groups (PAGs) who are helping share clear, accessible messaging and trusted resources with their communities.

Why Shine Your Searchlight Matters

Research participation is most powerful when it’s sustained over time. Each survey completed, record uploaded, and update shared helps researchers better understand how genetic conditions change across the lifespan and how care, support, and future treatments can improve.

Shine Your Searchlight is designed to help families move through each research participation step with confidence, clarity, and support.

Shine Your Searchlight Goals

During this year’s campaign, we aim to:

Increase completion of key research participation steps
Encourage participation across both new and established genetic communities
Strengthen partnerships with patient advocacy groups
Expand engagement through multilingual materials to better support international families
Create adaptable, reusable, IRB-approved outreach resources for long-term impact
Position Simons Searchlight as a trusted, collaborative research partner
Raise awareness of the breadth of genetic communities represented
Align a community-driven outreach campaign with Rare Disease Awareness Month

Our Patient Advocacy Group Partners

We are deeply grateful to the patient advocacy organizations partnering with us this year. Their leadership, trust, and community connection make this campaign possible:

16p11.2 Genetic Foundation
ATRX Research Alliance
Cask Warriors Foundation
Coalition to Cure CHD2
Coffin-Siris Syndrome Foundation
Cri Du Chat Research Foundation
CSNK2A1 Foundation
CTNNB1 Connect & Cure
CUL3 Support & Awareness
Cure CLCN4
DEAF1 Institute – Brazil
DLG4 SHINE Foundation
Duplication Cares
DYRK1A Foundation
GRIN2B Foundation
HADDTS Foundation
KMT2C Foundation
MED12 Foundation
MED13 Foundation
MED13L Foundation
Monoamine Oxidase Deficiency Foundation
NRXN1 Network
SETBP1 Society
US MEF2C Foundation
Yellow for Yiannis

What the Community Can Expect

Throughout February, families and individuals will see:

Step-specific outreach highlighting key research participation actions
Clear, plain-language explanations of why each step matters
Multilingual graphics and social messaging to support global communities
Optional bonus resources to support learning, connection, and long-term engagement
Stories and shared experiences that reflect the diversity of our community

Stay Up to Date: Check Your Dashboard

If you’re already a Simons Searchlight participant, the best way to stay engaged is by logging into your participant dashboard. Your dashboard shows any outstanding tasks, including key research surveys that are especially valuable during this campaign.

👉 Log in to your dashboard

Completing even one step makes a difference, and together, those steps add up to meaningful progress for research and the entire community.