[dbmat] Fwd: Looking for parents of children with Usher syndrome to participate in a research study

  • From: Edgenie Bellah <bellahe@xxxxxxxxx>
  • To: DBMAT <dbmat@xxxxxxxxxxxxx>, Teresa Banda <tbanda@xxxxxxxx>, "Glausier,Cassondra (HHSC/DARS)" <cassondra.glausier@xxxxxxxxxxxxxxxx>, Heather keiler-green <heather.keiler.green@xxxxxxxxxxxxxxx>
  • Date: Mon, 6 Jan 2020 14:10:22 -0600

If you have a child with Usher Syndrome or know a family who does, please
share this research opportunity with them.

Thanks,
Edgenie

---------- Forwarded message ---------
From: Usher Syndrome Coalition <j.dunning@xxxxxxxxxxxxxxxxxx>
Date: Thu, Jan 2, 2020 at 7:59 AM
Subject: Looking for parents of children with Usher syndrome to participate
in a research study
To: Edgenie Bellah <bellahe@xxxxxxxxx>


[image: Usher Syndrome Logo Header]
<https://u3655239.ct.sendgrid.net/wf/click?upn=Ijaa9U18P3Wxrqg59EKKpHjG6V8L5UcHUGtogAz0jUW4Rdh-2F06ag-2F4wvzREY-2BaUcouFpzoJDYcAidHQFQyD3XQ-3D-3D_D4KAUyUXYoz1tk-2ByigeiXMDA0W9OhJxt7vvyVbbR9xk0gvODy-2BjU773-2Ff83bzH3Ej8TuooEvaMpsDccp5UBnB8k23dIBJ65Y3NCu4bATNr84n6qQyj01xqPd3kl1BECv2nz1XbUMZHUifQn8r37TyeJpGAtrhQXDsZ3nq7wbcwE8gRIB2-2BLr4iDjtohJL-2F-2FRSa29f5Mtzexsq79d6Uj0TPiEF5U09gKmJxy-2FqLlI-2FkA8GoQmOe0N9Pk3pawHyWFud1XpenBko77bR7O6zcwKWcHIQgMG0lidw-2FNs6gmnnzrJwTD14HSEux-2Fo-2FMIb-2Fqu2DwAb0wjFU797C3a-2FLtan5cOAP-2Fd44GQqm-2FbO3bjcrHPvTPQ0rNMjSfs7lYli-2FVZfdue0msRQdqCUkW9EmGAyCQ-3D-3D>

Hello, Edgenie!

My name is Rachel Rabenn and I am a second-year genetic counseling graduate
student at the Brandeis University Master’s Program in Genetic Counseling.
I am doing my master’s thesis on Usher syndrome.

My thesis is an explorative study into the psychosocial needs of parents
who have a child diagnosed with Usher syndrome. This study aims to identify
common themes experienced throughout the parental journey and how the
medical system and healthcare professionals can improve in how they talk
about, and interact with families who have a child living with Usher
syndrome.

I am looking for individuals who meet all of the following criteria below:

   - Over the age of 25.
   - Speak English as their primary language.
   - United States citizens who are residing in the United States during
   the time they complete the survey.
   - Identify as the individual who is primarily involved in coordinating
   the medical and educational needs of this child.
   - Have a child under the age of 18 with a confirmed diagnosis of Usher
   syndrome type I, type II, type III, or atypical Usher syndrome.
   - Received their child’s diagnosis of Usher syndrome a minimum of 12
   months ago.

This anonymous online survey will take about 20 minutes to complete and
participants will have the option to enter a raffle for one of three $50
Amazon eGift cards.

Please pass along this message to anyone who may be interested!

*Link to Survey: https://brandeis.qualtrics.com/jfe/form/SV_1Y53WwFitQj71JP
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Thank you for your time.

Best,

Rachel Rabenn
Intern
Usher Syndrome Coalition

[image: USH Bug Footer]
*Our Contact Information*
Usher Syndrome Coalition
63 Great Road, Suite 207
Maynard, MA 01754
Toll Free: 1-855-998-7437
www.usher-syndrome.org <http://www.usher-syndrome.org?blm_aid=3192867>

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-- 
*Edgenie Bellah*
Family Engagement, Texas DeafBlind Project

512-206-9423 | fax: 512-206-9320

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  • » [dbmat] Fwd: Looking for parents of children with Usher syndrome to participate in a research study - Edgenie Bellah