International Symposium on Usher Syndrome: July 10-11, 2014
6th Annual Usher Syndrome Family Conference: July 12, 2014

International Symposium on Usher Syndrome | History in the Making
The Coalition for Usher Syndrome Research presents the Third International Symposium on Usher Syndrome in conjunction with the Sixth Annual Usher Syndrome Family Conference in Boston, Massachusetts at the Joseph B. Martin Conference Center at Harvard Medical School.

The International Symposium on Usher Syndrome will convene on July 10-11, 2014 bringing together researchers, clinicians, geneticists and specialists to examine the latest research and developments in Usher Syndrome. The meeting will enable the exchange of ideas and knowledge among different disciplines in order to facilitate new research and progress that focuses on Usher Syndrome.

The annual Usher Syndrome Family Conference will convene on July 12, 2014 bringing together professionals with those affected by Usher Syndrome. This unprecedented combination of events is expected to engage the largest number of constituents in the history of the Usher Syndrome community.

About Usher Syndrome
Usher Syndrome is the leading cause of deaf-blindness in the world.  Approximately 45,000 Americans are affected by this genetic disorder. Children with Usher Syndrome are born with or develop hearing loss and may also be born with or develop vestibular issues which adversely affect their balance. Early in life they will experience symptoms of a progressive vision disorder known as retinitis pigmentosa (RP). Initially, they will develop night blindness, followed by a narrowing of the visual field, commonly known as “tunnel vision,” leading eventually to complete blindness. Most individuals with Usher Syndrome are legally blind by the time they are young adults.

While there are currently no universally agreed upon treatments for Usher Syndrome, there are a number of treatments nearing clinical trial that could potentially help people with Usher Syndrome.

About the Coalition
Based in the United States, the Coalition for Usher Syndrome Research is a 501(c)3 non-profit organization dedicated to helping families cope with Usher Syndrome while working diligently to find a cure.  Our goal is simple:  Provide hope to families with Usher Syndrome.

The Coalition counts a number of leading institutions and researchers among its members. In the United States, member institutions from coast to coast bring their expertise and commitment to the work of the Coalition, collaborating with partners and researchers from some of the finest international organizations in the world. In short, the Coalition for Usher Syndrome Research strives to be the most comprehensive source of information on Usher Syndrome and the tremendous efforts being made to find a cure.


ABSTRACT SUBMISSION: Click here for guidelines and to submit an abstract

All Hotel Reservation Deadlines: June 4, 2014
Group rates are available at the following hotels:

The Midtown Hotel, 220 Huntington Avenue, Boston. The Midtown Hotel is a 10 minute taxi ride, or 4 stops on public transportation (the “T”) from the Martin Conference Center. To reserve, use Block Code “USHERSYN” to book online at:, or call The Midtown Hotel’s Reservations Department directly at +1-617-262-1000, or +1-800-343-1177 and identify the block name: “Usher Syndrome Conference.” Rates:  $159 single/double, $169 triple, $179 quad.

The Inn at Longwood Medical, 342 Longwood Avenue, Boston. The Inn at Longwood Medical is a 5 minute walk from the Martin Conference Center. Online reservations can be made at, select “Check Availability,” “Special code” then use Group Code: USHE0709. Or call the Hotel’s Reservations Department directly at +1-800-467-2378 or +1-617-731-4700 and refer to the “Usher Syndrome Conference 2014.” Rates: $200 One Bed, $209 Two Beds, $209 Handicap Accessible.

The Colonnade, 120 Huntington Avenue, Boston. The Colonnade is a 10 minute taxi ride, or 4 stops on public transportation, from the Martin Conference Center. Rates: $269 single/double, $299 triple, $329 quad. To reserve, contact Krista Vasi at or +1-978-637-2625.


International Symposium on Usher Syndrome
Diagnostics, Epidemiology and Population Genetics
Functional Genetics
Phenotypes and Natural History
Preclinical Studies
Therapy and Clinical Trials
Panel Discussion: Funding Usher Syndrome Research

Usher Syndrome Family Conference
Gene Therapy 101
Psychological Aspects:  Words from the professionals
Psychological Aspects:  A patient journey

Zubair Ahmed, PhD (Cincinnati Children’s Hospital, Ohio, USA)
Kumar Alagramam, PhD (Case Western Reserve University, Ohio, USA)
Maria Bitner-Glindzicz, MD (University College London, United Kingdom)
Hanno Bolz, MD (Bioscientia, Center for Human Genetics, Ingelheim, Germany)
Connie Cepko, PhD (Harvard Medical School, Boston, USA)
Dominic Cosgrove, PhD (Boys Town National Research Hospital, Nebraska, USA)
Arlene Drack, MD (University of Iowa, Iowa, USA)
Mark Dunning (Coalition for Usher Syndrome Research, Boston, Massachusetts, USA)
Anne Fulton, MD (Boston Children’s Hospital, Massachusetts, USA)
Margaret Kenna, MD, MPH (Boston Children’s Hospital, Massachusetts, USA)
William Kimberling, PhD (University of Iowa, Iowa, USA)
Hannie Kremer, PhD (Radboud University Nijmegen Medical Centre, Netherlands)
Jennifer Lentz, PhD (Louisiana State University, Louisiana, USA)
José M. Millán, PhD (Unidad de Genética, Valencia, Spain)
Ilene Miner, LSCW (Gallaudet Research Institute, Washington, DC, USA)
Claes Möller, MD, PhD (Audiological Research Centre, University Hospital, Örebro, Sweden)
Kerstin Nagel-Wolfrum, PhD (Johannes Gutenberg Universität Mainz, Germany)
René Pellerin (The Unstoppable, Vermont, USA)
Christine Petit, MD, PhD (Institut Pasteur, Paris, France)
Eric Pierce, MD, PhD (Massachusetts Eye and Ear, Boston, USA)
Heidi Rehm, PhD (Harvard University, Boston, Massachusetts, USA)
Stephen Rose, PhD (Foundation Fighting Blindness, Maryland, USA)
Anne-Francoise Roux, PhD (Hôpital Universitaire, Montpellier, France)
José-Alain Sahel, MD, PhD (Institut de la vision, Paris, France)
Nizar Smaoui, MD (GeneDX, Maryland, USA)
Edwin Stone, MD, PhD (University of Iowa, Iowa, USA)
Luk Vandenberghe, PhD (Massachusetts Eye and Ear, Boston, USA)
Richard Weleber, MD (Oregon Health and Science University, Oregon, USA)
Monte Westerfield, PhD (Institute of Neuroscience, Oregon, USA)
Uwe Wolfrum, PhD (Johannes Gutenberg Universität Mainz, Germany)


One-day special education law and advocacy programs focus on four areas:

-  special education law, rights and responsibilities
-  tests and measurements to measure progress & regression
-  introduction to tactics & strategies for effective advocacy

Wrightslaw programs are designed to meet the needs of parents, educators, health care providers, advocates and attorneys who represent children with disabilities regarding special education. The program is not disability specific.

Registration Fee:
   Individual:  $70 
(on or before February 21, 2014) ; $100 (through March 10, 2014)
       Online registration will be available soon. There will be no walk-in registrations. Register here:


8:00-9:00       Registration

9:00-10:30     Introductions

  • IDEA History and Overview
  • Section 1400 Findings, Purpose
  • Section 1401 Definitions: Special Education, Related Services, LD, etc.

10:30-10:45      Break


  • Section 1412 Extended School Year, Child Find, Least Restrictive Environment/Mainstreaming/Inclusion, Private Placements, Statewide Assessments
  • Understanding Tests and Measurements, and the Bell Curve, Standard Scores, Scale Scores, % ranks, Grade Equivalent, Age Equivalent

12:00-1:00  Lunch


  • Section 1414 Evaluations and IEPs
  • Section 1415 Prior Written Notice, Procedural Safeguards Notice, Mediation, Due Process Hearing, Appeal, Discipline, Age of Majority
  • Section 504, ADA, FERPA
  • NCLB No Child Left Behind
  • Litigation: Special Ed Caselaw
  • S.M.A.R.T. IEPs
  • Special Ed Advocacy for the Parent, Advocate, and Parent’s Attorney
  • Legal, systemic and “school culture” obstacles to compliance with IDEA-04

The Parent as the Special Ed Manager and Expert

  • Developing the Master Plan
  • Knowing the Rules of the Game
  • Recognizing and Avoiding the Fatal Obstacles
  • How to Deal with Conflict, a Healthy and Normal event
  • Crisis, Emergency, Help
  • Organization of the Child’s File

2:30-2:45 Break


  • Tactics and Strategies
  • Rule of Adverse Assumptions
  • Private Evaluations
  • Paper Trails
  • The Letter to the Stranger
  • 5 Ws + H + E
  • Preparation for Meetings
  • Meeting Strategies

4:00-4:30    Questions and Answers

Meeting will be in the Fellowship Hall.

Free Parking!

Conference includes a light breakfast, lunch, refreshments and three books Wrightslaw: Special Education Law, 2nd Edition, Wrightslaw: From Emotions to Advocacy, 2nd Edition, and Wrightslaw: All About IEPs.


Michael & Ruth Douglas will present their ministry to Brazil.  

Harvest mixed DEAF choir will sign/sing!

Please bring a covered dish. 


Welcome Friends,

Every two years, the AG Bell Convention brings together a diverse community that is committed to listening and spoken language for children and adults who are deaf and hard of hearing. We invite you to join more than 1,200 families of children who are deaf and hard of hearing, adults who listen and talk and the professionals that support them.

With a theme of “Magic Made Real: Celebrating Our Heritage, Transforming Our Future,” the convention will demonstrate the commitment to children and adults who are deaf and hard of hearing, their families and the professionals that support them; it will also highlight the innovative and dynamic trends that are shaping the future for our community.

Planning is underway for an action-packed convention that features a dynamic lineup of educational sessions that will inform and inspire you and social gatherings that will help you build new connections. We hope that you will consider sharing your knowledge as a presenter during the upcoming conference, and we welcome your insight as a professional, parent, or adult with hearing loss.

This year’s convention will be held at the Walt Disney Swan and Dolphin Resort in Orlando, Florida, which is ideally situated in the heart of Disney World and central to the surrounding theme parks and attractions. This award-winning resort features redesigned guest rooms, spectacular restaurants, five pools, and a white sand beach!

Come and experience the magic made real. The 2014 Convention will be here before you know it and I hope to see you there!

David Davis
AG Bell 2014 Convention Chair

- See more at:…


Save the date!


After a stimulating first international conference last year it is our pleasure to invite you to the 2nd conference on family-centred early intervention for children who are deaf or hard of hearing in Bad Ischl, Austria, from June 11th to 13th 2014. The Scientific Programme Committee (Christine Yoshinaga-Itano, Gwen Carr and Daniel Holzinger) as well as the local Austrian organizing committee, has started to prepare an international event that once again aims to provide a platform for Early Intervention professionals, researchers and parents to exchange evidence-based best practice.

The conference topic "Forging Global Collaboration" will be reflected throughout the programme by multinational and multiprofessional presentations, workshops, panels and network meetings.

The call for papers has been opened. We are looking forward to your submissions of presentations and posters for the conference.

The charming alpine Bad Ischl, well-known from "The Sound of Music", welcomes you once again!
Please check our new conference website periodically to stay up to date.
We look forward to meeting you once again, or the first time, in Bad Ischl in June 2014.


1/2 Day Emergency Preparedness Symposium for people who are deaf and hard of hearing.

Topics include:

  • Severe weather spotting & preparedness
  • General household emergency preparedness
  • NOAA Weather Radio options

You must Register online to attend!!!  Click  here to register.

Participants will receive a FREE NOAA weather radio adapted with a strobe light and pillow shaker


Our 2013 Tennessee RID State Conference is fast approaching this weekend in Memphis on June 7-8, 2013.  If you have not sent in your registration, come and pay at the door.  We will be at Deaf Connect of the Midsouth at 144 N. Bellevue, Memphis, TN 38104.

Friday night, June 7th
5 - 6 pm- Registration
6 - 9 pm- Workshop by our RID Region 2 Representative, Josh Penise. Josh will present Interpreting for Deaf People with Intellectual Disabilities for 0.3 CEUs

Saturday, June 8th
8- 9 am- Registration
9 am - 12 pm- Workshop by Josh Pennise Leadership in RID and Our Profession for 0.3 CEUs
12:30 - 1:30 pm- TRID State Annual Business meeting with lunch provided for all workshop attendees
1:30 -4:30 pm- Workshop by Helen Hosse, Randy Chappell, and Summer Chappell The Deaf-Blind World at a Glance for 0.3 CEUs

Prices to pay at the door
$65 for the whole weekend
$30- for Friday night only
$45- for Saturday only- includes lunch during the business meeting

Come join us @ Deaf Connect in Memphis, TN.  We hope to see you this weekend!

Any Summer Chappell at 901.550.6267


TBCD is back up!

Guest Speaker, Pastor Aric Randolph from New Life Deaf Fellowship in Fort Worth Texas.

The registration cost is $10, which will go toward lunch on Saturday. Be at Brentwood Baptist Deaf Church at 6 pm Friday May 31st. Your church will have the registration forms for any one of you that are interested in going.