Foundation Fighting Blindness – Cincinnati / Northern Kentucky Chapter

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Address: 7168 Columbia Gateway Drive, Suite 100, Columbia, MD 21046

Phone Toll Free: 800-683-5555

TDD: 800-683-5551

Local: 513-519-8919  (Tim Smith, Cincinnati/Northern Kentucky Chapter President)

Email: info@blindness.org

Website: www.blindness.org

Mission & Purpose

The urgent mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.

  • More than 10 million Americans of every age and race suffer vision loss from these blinding diseases.
  • The Foundation has funded thousands of research studies at hundreds of prominent institutions worldwide. Currently, the Foundation funds 116 grants and 71 institutions.
  • The Foundation funds leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.
  • Since its inception on September 16, 1971, the Foundation has raised more than $600 million.
  • Retinitis pigmentosa and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss leading to legal and/or complete blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.
  • Age-related macular degeneration has inherited risks and is characterized by a progressive loss of central vision. AMD is the leading cause of blindness in adults over age 55 in the U.S. and other developed countries.
  • The Foundation has 50 volunteer-led groups across the U.S.  These dedicated volunteers raise funds, increase public awareness, and provide support to their communities.
  • Leading retinal research scientists praise the advances enabled by the Foundation. (See below.)
  • The Foundation provides information and outreach programs for patients, families and professionals.

Services

The Local Chapter: Our Cincinnati/Northern Kentucky Chapter has leadership from our community who plan and host informational meetings, perform community outreach, lead fundraising efforts, and serve as liaisons between our families and the medical/research community. The Foundation and our local Chapter leadership host a number of events throughout the year. Our National Signature Event is the Cincinnati/Northern Kentucky VisionWalk, which occurs the first week of October annually. Others include a golf tournament, wine and beer tastings, dinners, and a host of others which bring together our members, the community and local businesses.

Resources: The Foundation offers information on resources for genetic testing, physician referrals, information on health and prevention, certification for low vision specialists through the Academy for Certification of Vision Rehabilitation & Education Professionals.

“Eye on the Cure” is the official blog of the Foundation. Authored by Dr. Stephen Rose, the Foundation’s chief research officer, and other contributors, the blog provides an insider view of the retinal research field, which, over the past decade, has exploded with scientific discoveries and advancements. The community can connect through the Foundation’s website using social media channels and message boards. “In Focus” and “In Focus Online” newsletters feature articles on the latest retinal research news, including FDA-approved clinical trials for retinal degenerative diseases, and updates on Foundation members and events.

Clinical Trials: Clinical trials are the final clinical research phase necessary for the Food and Drug Administration (FDA) to approve a treatment for use in humans. The clinical testing of experimental drugs is normally done in three phases, each successive phase involving a larger number of people.

The Foundation Fighting Blindness maintains a patient registry that may be used to help identify clinical trial participants. The registry is designed to collect basic information about individuals with retinal degenerative diseases. When critical information about a specific disease or clinical trial becomes available, the Foundation will alert individuals in the registry via email and/or regular mail. The registry also provides crucial statistical information to our researchers and helps the Foundation obtain financial support for research projects and educational services.

Eligibility

Anyone who is affected by, has a family member or friend affected by vision loss due to retinal degenerative diseases, or has in interest in promoting our mission is welcome.

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