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May 2024 Newsletter From ISPB & PBIL

Eyes on Capitol Hill

Prevent Blindness will be hosting the ASPECT Patient Engagement and Advocacy Summit, May 14-16, 2024, at the Madison Hotel in Washington, D.C. The Summit will bring together ASPECT (Advocacy, Support, Perspective, Empowerment, Communication, and Training) Patient Engagement Program graduates (eye health patients and their allies), and program sponsors.

As part of the event, Prevent Blindness will also hold its 19th Annual Eyes on Capitol Hill legislative day, providing participants with the opportunity to meet elected officials and their staff to discuss important public policy and federal funding requests.

For more information visit HERE

Prevent Blindness and ISPB have designated May as “Inherited Retinal Disease (IRD) Genetic Testing Awareness Month,” expanding its previous IRD and Genetic Testing Awareness Week initiative. We are providing a variety of tools to promote awareness and education for IRDs and the importance of genetic testing, including a free webinar, expert and patient videos, shareable social media graphics, and fact sheets in English and Spanish. IRD Genetic Testing Awareness Month is supported by funding from Johnson & Johnson, and Spark® Therapeutics.

For more information visit HERE

Pathway to Diagnosis: Genetic Testing for Inherited Retinal Diseases
May 29, 2:00 pm – 3:30 pm ET.

In this 90-minute webinar, you will gain a deeper understanding of genetic testing as it contributes to diagnosis for an IRD. Topics include when and how children may receive genetic testing; benefits of receiving results for diagnosis, registries, clinical trials, and treatments; strategies for providing information and support to families and children; and patient testimonials about their IRD journeys.

This webinar is tailored for families of children with inherited retinal diseases and visual impairment, patient support organizations, school nurses, early childhood program staff including Head Start, Early Intervention and special education professionals, teachers of students with visual impairments, and healthcare providers.

Register HERE

Community Happenings

Our staff, team of interns, and volunteers provide eye health education and outreach at all types of community events – including health fairs, presentations and screenings!

We will be continuing our efforts during these dates:

July 9, 2024
1:30pm – Carillon Clubhouse: Plainfield, IL

August 9, 2024
11:00am – RUSH’s 9th Annual Community Health Fair:      Chicago, IL

For more information, please contact

BEING SEEN AND HEARD: July 10-11, 2024

2024 Focus on Eye Health Summit, a virtual interactive event

This year’s event emphasizes the importance of a person-centered approach to vision health interventions, research, communications, and care. Being seen and heard by providers, policy makers, researchers, public health experts and other stakeholders allows an individual’s complex health issues to be addressed while taking into consideration their preferences, cultural background, and social context. And ultimately, it leads to the most ideal outcomes for all involved in the interaction.

The free event attracts a global audience of patient advocates, community-based organizations, vision and eye health organizations, researchers, public health experts, health-care providers, educators, early childhood education professionals, senior- and child-care professionals, government agency staff, corporate partners, health program professionals, legislative staff, and other stakeholders.

Register HERE

Be a Voice for Vision: Sign Up for Advocacy Alerts from Prevent Blindness

Prevent Blindness regularly issues email alerts when there is an opportunity for advocates to contact legislators in Congress with sight-saving policy and legislative updates. Advocates who are interested in making their voices heard can register with their email address at the Prevent Blindness Legislative Action Center. Advocates who register will also receive bi-monthly advocacy news and policy updates from Prevent Blindness.

If you have any questions, please email Thank you for your commitment to preventing blindness and preserving sight!

Copyright © 2017 Illinois Society for the Prevention of Blindness

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Illinois Society for the Prevention of Blindness |
Prevent Blindness Illinois

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