Become a Vision Advocate

Our Family Network Members are the driving force behind Vision of Children’s advocacy efforts. We invite you to join us. Your personal experience with an inherited vision disorder or your stories about the challenges of raising a child with a genetic eye disease will have an impact when you share them with elected officials. Through e-mails, phone calls, letters, and face-to-face meetings with decision makers, you can influence policy and improve lives. 

Ways to get Involved as a Vision Advocate

Contact your local member of Congress and introduce yourself. Tell your legislator why you are passionate about vision and eye health issues. 

Become knowledgeable about bills that impact funding for eye research or vision health. When those issues come before Congress, tell them why it is important to support / defeat the bill. When legislators receive hundreds of personalized messages about an issue, they notice and take action. When you send a letter to a member of Congress, it is best to send to the local office. 

Remind them that you live in their district and why you feel strongly about eye health. In Washington, and in your hometown, you can set up meetings with your elected representatives. Never go in unprepared – tell them stories about your family and the impact of genetic eye disease, give them facts about cost and numbers of people impacted, and give them a call to action. Tell them how important it is that adequate resources are directed to research, prevention, and treatment of eye diseases.

Another Way to Start Advocating:

Is your local representative a member of the Congressional Vision Caucus?

Check a list of current members.

If he or she is a member, offer your thanks, and ask for advice on how to spread the word about the importance of curing vision disorders. If he or she is not a member, determine if the reasons are political, personal, or due to a lack of information. Offer to give information that might sway the Representative to join. Inform your elected official of your own interest and urge them to consider joining the Caucus. Finally, share your advocacy stories with other Family Network Members. Tell us about your meetings with elected representatives. We’ll tell others and inspire them to action! 

Helpful Resources for Vision Advocates:

The National Alliance for Eye and Vision Research (NAEVR) are Washington-based advocates for increased vision research funding for the National Eye Institute/NIH. They have up-to-date information on pending bills and budgets.

The National Eye Institute conducts and supports important vision research and disseminates information about eye disease. The NEI receives about $700M / year in federal funding for research into all eye diseases.

The Centers for Disease Control and Prevention has a Vision Health Initiative that seeks to prevent and control eye disease, injury and disability. While mainly focused on adult onset vision loss, there is information about the cost of impaired vision. There is additional information about childhood eye disease on the CDC’s National Center on Birth Defects and Developmental Disabilities website.

The Maternal & Child Health Bureau is a division of the Health and Human Services Administration, a federal agency that can offer information and resources to families with special needs children.

Prevent Blindness America, an Illinois-based nonprofit, has a "Voice for Vision" program that offers Action Alerts on issues related to eye health public policy. PBA advocates specific positions on certain bills before Congress.