At our last meeting of the spring, two dynamic speakers will address the importance of vision problems for children and adults who are deaf or hard of hearing. First, Mark Dunning will lead off with Usher Syndrome and You. Usher syndrome is the leading cause of being deaf and blind in the United States and Europe. When someone has Usher Syndrome, they are born with hearing loss and lose their vision later. A standard thorough eye exam for a six-month old baby does not pick it up. In the past, Usher Syndrome could not be diagnosed until the person’s eyesight was already closing in. Now, Usher Syndrome can be diagnosed by a genetic test in babies or at any age. Genetic testing is showing that Usher syndrome is far more common than traditionally believed. The early diagnosis of a problem that will become important later raises many questions. Who should be tested? Does the test result always predict the future? What can be done to halt the vision loss? Mark will discuss the causes and treatments for Usher syndrome and why we need to know about it.

Mark Dunning is the proud father of Bella, age 11, and Jack, age 8. He works as the Director of Information Technology at L.E.K. Consulting. He is also the President and founder of the Decibels Foundation ( www.decibelsfoundation.org ). He has spearheaded parental involvement and communication with clinicians and scientists in the area of Usher Syndrome. In his journey to help, Mark has become President and founding member of the Coalition for Usher Syndrome Research and a board member of Hear See Hope. He also serves as a board member of the New England Regional Genetics Group, and he is a contributing writer to the Usher Syndrome Blog.

After a break for snacks and chatting, Andrew Baker, O.D. (Doctor of Optometry) will speak on Vision and Hearing Loss.. This session will provide a general overview of the unique associations between vision and being deaf, and how to sometimes diagnose causes of congenital hearing loss from the eye exams.

Dr. Baker specializes in vision care optometry for people who are deaf at the Harvard Medical School’s Dept. of Ophthalmology at Massachusetts Eye and Ear Infirmary (MEEI), where he has worked for 25 years. He communicates well orally or in sign language. He earned a BS in Biology from Rochester Institute of Technology (RIT) and a Doctorate of Optometry degree from the New England College of Optometry. He won Outstanding Alumni Awards (twice) from RIT.. He was given MEEI’s Reynolds Society Outstanding Achievement Award in 1993. In March of 2010 he was honored as the National Deaf Person of the Month. You can read his fascinating story at http://www.deafpeople.com/dp_of_month/DrAndrewBaker.html

To spice up the day, we will have a raffle for a NoizFree twin binaural headset for audio devices. Tickets are $1.00 each, with proceeds going to the MIC. This device plugs into your iPod, MP3 player, DVD player, gameboy, etc. and hooks next to your processors. If you only have one implant, you can wear both hooks on the same ear to get all of the sound. Your processors need a telecoil (telephone switch) feature in order to work with the NoizFree. If you put your processors on the T setting, you will hear only the music. On the MT setting you will hear the music and the environment. Not sure? Ask your audiologist!

We will have the UbiDuo set up for easy text-supported chatting between people who can not hear well enough to get to know each other by talking during breaks.

Joan Celebi will lead the popular mentoring games for children age 5 years and up. Information is on page 2.

Child care will be provided for children age 18 months and up. Graduate students in communication disorders will guide the children’s play, and will come into the meeting room to call a parent if a special cuddle or a diaper change is needed. Juice and snacks will be provided for the children.

Terri Charles, our refreshment coordinator, asks people with last name A - L to bring some food like munchies, cheese & crackers, cookies, vegetable & dips, soda, juices (nonalcoholic) for the table. Coffee and tea will be available along with cream, milk and sugar.  (At the next meeting, M - Z can bring food.)

Directions:

Children’s Hospital Boston at Waltham
9 Hope Avenue
Waltham, MA 02453
Phone: 781-216-2100

After going in the main entrance, walk straight past the reception desk and turn right.  Go down the hall and turn right at the sign that says Conference Center. Go down that hallway and turn left just before the sign that says Medical Office Building.  Then you will have arrived at the Flaschner Conference Rooms!

From the Massachusetts Turnpike (Interstate 90) Eastbound

Take exit 14 for I-95/Route 128. After the toll, keep left for 95/128 North. While on ramp, exit immediately onto exit 24 for Route 30. Bear left onto Route 30. Turn right at first traffic light onto River Road. Follow this for 1.5 miles, where it turns into South Street. Go past Brandeis University. Continue about 1/4 mile and take a right on Longview Avenue. Follow signs, bearing left around parking garage, to entrance for Children’s Hospital Boston at Waltham.

From the Massachusetts Turnpike (Interstate 90) Westbound

Take exit 15 for I-95/Route 128 and Route 30. After the toll proceed straight for Route 30. Turn right at end of the ramp, and then right again at first traffic light onto Route 30. Turn left at next traffic light onto River Road. Follow this for 1.5 miles, where it turns into South Street. Go past Brandeis University. Continue about 1/4 mile and take a right on Longview Avenue. Follow signs, bearing left around parking garage, to entrance for Children’s Hospital Boston at Waltham.

From I-95/Route 128 Southbound

Take exit 24 for Route 30. At end of ramp, proceed through traffic light (across Route 30). This is River Road (River Road becomes South Street). Go past Brandeis University, which is two miles ahead. Continue about 1/4 mile and take a right on Longview Avenue. Follow signs, bearing left around parking garage, to entrance for Children’s Hospital Boston at Waltham.

From I-95/Route 128 Northbound

Take exit 24 for Route 30. Route 30 is one of several options at this exit, so follow signs carefully. Turn left at the top of the ramp onto Route 30. Turn right at the traffic lights. This is South Street, travel two miles and pass Brandeis University. Continue about 1/4 mile and take a right on Longview Avenue. Follow signs, bearing left around parking garage, to entrance for Children’s Hospital Boston at Waltham.