2017 Make-A-Miracle Conference for Aniridia

During the first week of August, I attended a conference hosted by Aniridia Foundation International (AFI). Aniridia means “lack of the iris,” which is the colored ring around the pupil of the eye. Advances in research and development have shown that the impact of aniridia extends beyond the eye and can affect the development and maintenance of the eyes, pancreas, central nervous system, olfactory system, and parts of the brain. Aniridia is caused by a mutation of the PAX 6 gene which is now known to control development of the eyes as well as several systems in the body.

AFI is a non-profit organization that promotes the research of aniridia syndrome and assists individuals and families with aniridia in getting the medical and educational resources they need. AFI was created to unite people with aniridia, their families, physicians, researchers and teachers to work together towards the organization’s goals. AFI maintains an International Medical Registry to assist in the advancement of research and improved treatments of the conditions which make up this multi-faceted syndrome. AFI carefully invites well respected international physicians and researchers to join Medical and Scientific Advisory Boards. These physicians and researchers have extensive experience in the clinical care of aniridia syndrome and the genetics related to it. They are leaders respected by their peers in their subspecialty areas. Visit www.make-a-miracle.org to learn more about AFI.

The AFI conference was held in Lake Junaluska, North Carolina. Many of the presentations at the conference were from researchers and medical doctors. Topics included treatment solutions for cataracts, glaucoma and keratopathy. Talks also included sensory processing disorders, central auditory processing disorder, metabolism, sleep and other areas that may affect someone with aniridia syndrome. The conference included breakout sessions on education, how to get help for students and presentations from adults with aniridia. Since many people who have aniridia are low vision, I presented a short session on common low vision issues found on websites and mobile devices. I included some tips on how people can make their Microsoft Word documents accessible and resources they can review. Below are some tips to make a Word document more accessible:

  • Style any bold, italic, underlined, colored and/or large stand-alone phrases as a heading
    1. Using the Styles pane on the Home tab locate the Styles group
    2. Locate and select Heading 1, Heading 2, etc.
  • Use the built in List styles buttons for bulleted and numbered lists
    1. On the Home tab, locate the Paragraph group
    2. Select the Bullets button for an unordered list
    3. Select the Numbering button for an ordered list
  • Use the built in Table control to create tables instead of pressing tab or space bar
    1. From the Insert menu, select Table from the Tables group and the desired dimensions
    2. Once text is in the table, with the cursor in the top row, select the text in that row
    3. Activate the context menu (right-click) and select Table Properties
    4. From the Row tab in the Table Properties dialog ensure the Repeat as Header Row at the Top of Each Page is checked
    5. Activate OK in the dialog
  • Use as dark of colors against the white background as possible.
    • For Example, of the Standard Colors the red on the left is darker and meets the minimum contrast ratio whereas the other red does not.
  • Use sans-serif fonts like Arial and Verdana when possible.
    • Though a serif font, Times New Roman is often acceptable.
  • Provide meaningful, concise descriptions on mages
    1. Activate the context menu (right-click) on the image
    2. Select Format Picture
    3. Under the Layout & Properties icon select Alt Text
    4. Describe the image in the Description field (not the title).

After the presentation, I joined a Walk for Sight, hosted by AFI. The Walk raised both awareness and funds for research of aniridia. Another primary benefit of attending was connecting with other adults and families with aniridia. It is always a rewarding experience to meet others with similar challenges and to see how they handle their conditions. Socially, there was a cornhole tournament, opportunities to hike, go kayaking or simply sit on the beautiful, historic porches in a rocking chair. A gala to celebrate 15 years of research, outreach and connecting the top doctors with patients was held the last night of the AFI conference.

Cammie is a Senior Accessibility Analyst with nearly ten years of experience in testing, remediating, and providing author training on an array of platforms including HTML, iOS, Android, MS Office, and PDF. Cammie has a process-driven mentality and subject matter expertise in the field of accessibility, resulting in systems that offer universal functionality and usability to the broadest possible audience.

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