What's New with USH, March 2016

March 21, 2016


MESSAGE FROM THE CHAIRMAN

Like the Usher syndrome community we represent, the Usher Syndrome Coalition continues to grow in size and influence. The community and Coalition often feel like they are one and the same. Since our last newsletter in November we have added scholarships to the family conference to ensure everyone has an opportunity to attend, partnered with the Stephen A. Wynn Institute for Vision Research to provideaccess to genetic testing for everyone with Usher syndrome, and were nominated for a Classy award for excellence in philanthropy. All this as our registry, family network, and advocacy efforts continue to expand. In just the past few months, we’ve done a lot. Yet I’m here to tell you this is just the beginning, both for the Coalition and the community. There are more great programs coming that will expand your access to information about Usher syndrome research while increasing the pace of that research. So watch out for coming announcements. And, as always, thank you. We couldn’t do any of it with your help and support.

Mark Dunning


SUPPORT USH ON CAPITOL HILL

THERE'S STILL TIME:

Ask your representative to sign on to support the inclusion of Usher syndrome report language.

For those in the US, the deadline to have your Member of Congress sign the Dear Colleague Letter is TOMORROW, close of business Tuesday, March 22nd.

Congresswoman Niki Tsongas is leading this letter to the House Committee on Appropriations, which is being circulated on Capitol Hill. The letter urges representatives to join the Congresswoman in supporting research regarding the treatment of Usher syndrome at the National Institutes of Health (NIH) by signing on to the letter by close of business Tuesday, March 22nd.

Thank you to all who have contacted their Members of Congress so far. We encourage you to reach out to your representatives again to urge them to sign on to this Dear Colleague letter supporting Usher syndrome report language.

As of today, the following representatives have signed on:

Congresswoman Suzanne Bonamici (Oregon, 1st district)

Congressman Earl "Buddy" Carter (Georgia, 1st district)

Congressman Matt Cartwright (Pennsylvania, 17th district)

Congressman Peter DeFazio (Oregon, 4th district)

Congressman Keith Ellison (Minnesota, 5th district)

Congresswoman Sheila Jackson Lee (Texas, 18th district)

It's important that your representative hears from you today. As evidenced by our past advocacy efforts, when you speak, they listen. 

Click here to find your representative by zip code.

Once you've located your representative, you'll be able to click through to a "Contact" page where you can send him or her your personalized message.
 
Here's a sample message to work from:
 
Dear Representative [Name]:

My name is [NAME] and I [HAVE USHER SYNDROME/HAVE A FAMILY MEMBER OR FRIEND WITH USHER SYNDROME/AM A RESEARCHER WORKING ON USHER SYNDROME]. Usher syndrome is the most common genetic cause of combined deafness and blindness. It impacts nearly 50,000 Americans. Those with Usher syndrome and their families demonstrate courage every day in overcoming the challenges they face.
 
I urge you to support research regarding the treatment of Usher syndrome at the National Institutes of Health (NIH) by signing the Dear Colleague letter to the House Committee on Appropriations in circulation today. Led by Congresswoman Tsongas, this letter supports the inclusion of report language directing the NIH to prioritize Usher syndrome research at the National Eye Institute (NEI) and the National Institute on Deafness and Other Communication Disorders (NIDCD). The deadline to sign on is COB Tuesday, March 22, 2016.

We hope we can count on your support and we look forward to working together in order to eradicate this disease for current and future generations. 

Sincerely,

[Name]

Email your House Representative now.

Read Mark's latest blog for a summary of our recent activities in Washington, DC.


ANNOUNCING THE LAUNCH OF UNRAVELING USH

AN USHER SYNDROME GENETIC TESTING INITIATIVE

Unraveling USH is a collaborative effort between the Usher Syndrome Coalition and the Stephen A. Wynn Institute for Vision Research at the University of Iowa to ensure everyone with Usher syndrome has access to genetic testing. Unraveling USH seeks to provide guidance and affordable testing to people who have been unable to get genetic testing in the past, either due to lack of access or financial barriers. This initiative will help to fulfill the Usher Syndrome Coalition's goal to identify everyone with Usher syndrome worldwide, while offering state-of-the-art genetic testing through the John and Marcia Carver Nonprofit Genetic Testing Laboratory at the University of Iowa.

Learn more about how to participate and visit our Q&A page to learn about the importance of genetic testing and other frequently asked questions.


INTERNATIONAL USHER SYNDROME REGISTRY

The Registry aligns over 1000 registrants from 50 countries with the latest advances in research and treatment. The Registry is available in Dutch, SpanishHebrew and English, with more translations in the works.

In MediaPlanet's latest Vision & Hearing campaign, Nancy O'Donnell, director of the International Usher Syndrome Registry, reminds us of the importance of being recognized as someone with - or a parent of a child with - Usher syndrome. Of the 400,000 people worldwide living with Usher syndrome, the research community is in touch with less than 1%. We aim to change that.

Registering is simple and confidential, and involves no commitment or promise to do anything except to be recognized as a person with Usher syndrome. The Usher Syndrome Coalition team looks forward to linking you to the latest information and opportunities to participate in studies and surveys. Join today: www.usher-registry.org.

You can learn more about Nancy in her blog post, Calling all Experts, also available as a signed vlog on our YouTube channel.


USHER SYNDROME FAMILY NETWORK

 

The Family Network links over 300 families from dozens of countries.

The goal of the family network is to connect Usher individuals and families. Many families join the Family Network for their own benefit. They want to talk to someone with similar experiences. They want information. They want help. But in the process of communicating with other Usher families, they end up providing precisely what they are seeking.

You can join the Family Network here.

 


USH2016 USHER SYNDROME FAMILY CONFERENCE

The Usher Syndrome Coalition presents the 8th Annual Usher Syndrome Family Conference, to be held on Saturday, July 9, 2016 at the Washington Athletic Club in downtown Seattle. 

Join us for this annual gathering, a place for individuals with Usher syndrome, family members, friends and professionals to learn about the latest advances in Usher syndrome research. The event's science sessions, family panel, research Q&A, lengthy breaks and evening social allow for the opportunity to connect with others impacted by Usher syndrome and engage with researchers who are working tirelessly towards a cure.

Register Online or download the 2016 Registration Form. Complete and mail this form with payment byJune 24, 2016 to:

Usher Syndrome Coalition, 2 Clock Tower Place, Suite 418, Maynard, MA 01754

To view a general announcement and registration information in ASL, click the YouTube videos below.

2016 Usher Syndrome Family Conference Information in American Sign Language

2016 Registration and Sponsorship Information in American Sign Language


USHER SYNDROME FAMILY CONFERENCE SCHOLARSHIP PROGRAM

A picture of gold and white words written on a black background announcing the USH2016 Scholarship Awards.

We are proud to announce the 2016 USH Family Conference Scholarship Program, made possible by the Global Genes RARE Patient Impact Grant. The creation of the USH Family Conference Scholarship Program will enable individuals with Usher syndrome and their families to attend the 8th Annual Usher Syndrome Family Conference in Seattle, Washington on July 9, 2016. Scholarships are based on financial need and will assist families or individuals who would otherwise be unable to attend. Applying for a scholarship is easy. Deadline to apply is April 15th.

Download the 2016 Usher Syndrome Family Conference Scholarship Application.


OWN THE EQUINOX CAMPAIGN NOMINATED FOR A CLASSY AWARD

The Usher Syndrome Coalition's global campaign to Own the Equinox for Usher Syndrome Awareness has been nominated for a Classy Award. The Classy’s have been likened to the “Oscars for philanthropy.” The global campaign to Own the Equinox has been nominated because it addresses a social problem using an innovative approach. It speaks to the increased rates of social isolation within the Usher community. As the only organization in the world seeking to identify and support every person living with Usher syndrome, the campaign demonstrates how this unprecedented global movement empowers participants, fostering emotional well-being and engagement. The 100 finalists will be announced in April and the Classy Awards will be presented on June 16, 2016 in Boston, Massachusetts. Be sure to help us Own the Equinox again this August, leading up to the second annual Usher Syndrome Awareness Day on Saturday, September 17, 2016.

The Classy Awards Logo

RECENT USHER SYNDROME BLOG POSTS

Dreams and Realities March 14, 2016 by Mark Dunning

The Usher Syndrome Coalition spent a busy two days in Washington, DC. Read more...

A Little Voice | March 8, 2016 by Kate Morell

'To be fiercly independent. Determined. Perserving. Tenacious. Kate wonders if these qualities go hand and hand with Usher syndrome. Read more...

DC Dream | March 1, 2016 by Mark Dunning 

Mark Dunning describes his dream of the Usher Syndrome Coalition working with researchers and the National Institutes of Health to identify the most valuable research and the steps that will quickly deliver viable treatments to the Usher syndrome community. Read more...

If Only | February 25, 2016 by Kate Morell

If only I had left my words to be found. If only I had the voice to speak the words I wrote. Read more...

The Art of Being Sad | February 16, 2016 by Mark Dunning

Usher syndrome can mean a lot of things, including community and friendships and family. But it's also a place with bogs and lowlands where the mist gathers and the sadness pools. Read more...

What Does it Mean to Be a Traveler with Usher Syndrome? | January 21, 2016 by Dario Sorgato

Dario describes his passion for travel and adventure and some tips he has collected along the way. Read more...

A Little Brother | January 14, 2016 by Jack Dunning

Experiences of a Young Clueless Boy: A little brother's view of Usher syndrome. Read more...

Finnegan Returns to South Beach | December 17, 2015 by Moira M. Shea

Moira Shea has Usher syndrome 2A, wears hearing aids and is totally blind. She also has a rock star guide dog named Finnegan. Read more... 

CLICK HERE TO READ OLDER USH BLOG POSTS 


ADDITIONAL RESOURCES

The Usher Syndrome Coalition provides a number of other resources for families with Usher syndrome including:

The Usher Syndrome Registry and Family Network
The Usher Syndrome Coalition website
blog on Usher syndrome issues
Facebook and Twitter
An effort to increase NIH awareness of Usher syndrome

You are welcome to take advantage of any and all of these resources.


QUESTIONS?

CALL US

Toll Free: 1-855-998-7437 (1-855-99-USHER)

Videophone: 1-631-533-9621

EMAIL US

Krista Vasi, Executive Director: k.vasi@usher-syndrome.org

Nancy O'Donnell, Registry Director: n.odonnell@usher-syndrome.org

Julia Dunning, Events Coordinator: j.dunning@usher-syndrome.org


ADA INFORMATION HOTLINE

The United States Department of Justice operates a toll-free Americans with Disabilities Act (ADA) Information Line to provide information and materials to the public about the requirements of the ADA.

If you'd like assistance understanding how the ADA applies to your situation, ADA Specialists are available Monday through Wednesday and Friday from 9:30 AM to 5:30 PM.

1-800-514-0301 (Voice)
1-800-514-0383 (TTY)
Calls are confidential

ADA Links and Resources

Our Contact Information
Usher Syndrome Coalition 
2 Clock Tower Place, Suite 418
Maynard, MA 01754
1-978-637-2625
http://usher-syndrome.org/

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