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A Must-Attend Event for People and Families Affected by Usher Syndrome

Usher Syndrome Family ConferenceFor those affected by Usher syndrome, the world’s leading cause of combined vision and hearing loss, there’s an upcoming event in Boston that should not be missed. Actually, it’s two events, back-to-back: the International Symposium on Usher Syndrome July 10 and 11; and the 6th Annual Usher Syndrome Family Conference July 12.

Organized by the Usher Syndrome Coalition, an outstanding partner of the Foundation Fighting Blindness, these two events will not only be chock full of scientific updates; they’ll provide you with the opportunity to network and socialize with others taking on the challenges of Usher syndrome.

I have the privilege of speaking at the International Symposium, which will feature presentations from nearly three dozen of the world’s leading Usher syndrome researchers and experts, many of whom are funded by the Foundation Fighting Blindness. While the Symposium is an exchange between the professionals, you’re encouraged to attend, listen in and learn about all the great vision and hearing research underway.

In addition to providing additional science reports, the Family Conference, which follows the Symposium, will provide a unique opportunity to participate in interactive breakout sessions, such as:

  • Partners and Spouses of Adults with Usher Syndrome
  • Living and Transitioning with Usher Syndrome
  • Parents’ Knowledge Exchange: Raising a Child with Usher Syndrome
  • Young Adult College & Career Chat


You’ll even have the opportunity to schedule a genetic counseling session with staff from the Laboratory for Molecular Medicine at Partners HealthCare Personalized Medicine.

And, on the evening of June 12, the Family Conference will wrap up with a barbecue at Simmons College.

Please say hello, if you are able to attend. I hope to see you there.

In case you didn’t know, the mission of the Usher Syndrome Coalition is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.

The Coalition and its constituents are using #USH2014 – Road to the Symposium to grow their online community. Feel free to contact the Coalition and/or register for the events here.

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5 Responses to 'A Must-Attend Event for People and Families Affected by Usher Syndrome'

  1. John Van Dam says:

    Hello, how do I find out about the details of attending the events in Boston in July?

  2. Dr. Margaret C. Allan says:

    Please, pass on further information. I would very much like to attend, if possible. My son has Usher Syndrome Type 2.
    Dr. Margaret Allan

  3. Diane Putman says:

    Since I have two daughters with Ushers Type 2, I am extremely interested in the latest information. I’ll bring this to their attention.

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