Project Usher FAQ

My child has Usher Syndrome. What do we need to do to participate in Project Usher?

The best way for you to proceed is to take the information about Project Usher from our web page to your child's physician. Your physician will be able to complete the necessary paperwork to order the proper test for your child. All of the necessary documents can also be found on our web site. You may also want to read some special instructions for Project Usher participants.

There are at least four good reasons for involving a physician in genetic testing, including:

  1. The accuracy of a genetic test is dependent to a significant degree on the accuracy of the clinical diagnosis;
  2. The sensitivity of the genetic test is also greatly increased by an accurate clinical diagnosis;
  3. Genetic test results can be complicated and should be carefully explained to patients and family members by a knowledgeable professional;
  4. Patients with inherited eye disorders can develop additional medical problems that are treatable in some cases.
Will insurance cover genetic testing for Usher Syndrome?

Due to the increased awareness of the potential benefits for genetic testing, the number of insurance companies providing coverage for testing is increasing as well. It may take a little convincing, however. Patients or physicians may download a letter to assist them in obtaining insurance coverage for the Usher Syndrome test.

My insurance company will not pay for genetic testing. Now what?

One of the five major goals of Project Usher is to make a genetic test for Usher Syndrome available to everyone who might benefit from it. To this end, the Carver Nonprofit Genetic Testing Laboratory is pleased to be able to provide some financial assistance to families who need genetic testing for Usher Syndrome but cannot afford it. This assistance is possible because of generous philanthropic donations to the Project Usher Fund.

Patients and physicians may download a form to use in requesting Project Usher financial assistance for the Usher Syndrome test here.

What can I personally do to move research forward?

There are three basic ways to help. First, you can assist in the quest to identify all of the estimated 20,000 individuals in the U.S. with Usher Syndrome. If you are aware of someone who has been diagnosed with Usher Syndrome you can encourage him or her to seek genetic testing through their physician.

The second is by joining the Usher Syndrome Coalition. This is an international Usher advocacy group led by families affected with Usher Syndrome and scientists who are working to cure it. All families personally touched by Usher Syndrome would benefit from joining this great organization.

The third way is by contributing to the Project Usher Fund and/or the William Kimberling Usher Research Laboratory. These very low overhead funds, managed by the University of Iowa Foundation and the Carver Nonprofit Genetic Testing Laboratory, were specifically created to facilitate genetic testing of individuals with Usher Syndrome and research designed to develop treatment for this disease.