What's New with USH, August 2017

August 10, 2017


MESSAGE FROM THE EXECUTIVE DIRECTOR

"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me...Anything can happen, child. Anything can be."

-Shel Silverstein

This quote sits framed in my office to serve as a daily reminder. A reminder that, together, we can do anything. We can build this beautiful, unique Usher syndrome community from the ground up. We can provide vital information while connecting everyone living with Usher syndrome. We can listen and learn from each other in order to better support our USH family. We can bridge the gap between researchers and those with USH. And we will find a cure. 

On August 22nd, I hope you will join me in turning those 'shouldn'ts', those 'never have's and those 'wont's' into action. Through our walk-a-thons, yoga-thons, bake-a-thons (anything you like, really!), we will Own the Equinox, raise funds to continue the Coalition's vital work, and tell the world about Usher syndrome. Then, on September 16th, Usher Syndrome Awareness Day, we will demonstrate the power to make the impossible possible. We will, quite literally, keep the sun from setting on the Usher syndrome community. 

We have a bold mission. A mission that some might say is impossible. But you and I know better. We know that together, we can achieve it. Together, we are unstoppable.

Krista Vasi

Executive Director


OWN THE EQUINOX FOR USH AWARENESS | #USHEQX

Usher Syndrome Awareness Day | Saturday, September 16, 2017

Join us for this this 26-day challenge starting August 22nd, and culminating in our third global Usher Syndrome Awareness Day on Saturday, September 16, 2017. 

HOW TO OWN THE EQUINOX:

  • Create your own 'a-thon' in your hometown: Start your own run-a-thon, spin-a-thon, yoga-thon, bake-a-thon...anything you'd like to do to raise awareness for USH.
  • Challenge your friends and family to participate and contribute to your fundraising page.
  • Get moving on August 22nd for the next 25 days until we all join together in spirit on September 16th, Usher Syndrome Awareness Day. We will turn an otherwise normal day into a 31-hour event, traversing the globe from Australia to Alaska.
  • Tell the world: Post your progress and pictures on Facebook, Twitter and Instagram using the hashtag #USHEQX. If you're not on social media, but still want to Own the Equinox, let us know where you are and what you're up to. We want to share your efforts with the world. Email Julia at j.dunning@usher-syndrome.org with your location and how you're choosing to Own the Equinox. CLICK HERE TO JOIN US!

ASK YOUR GOVERNOR TO RECOGNIZE USH AWARENESS DAY

You can take your USHEQX efforts a step further by asking your state to recognize Usher Syndrome Awareness Day. Last year, Coalition Board Director Danay Trest submitted a proclamation request to Mississippi Governor Phil Bryant. Governor Bryant has now recognized Usher Syndrome Awareness Day two years running! Danay is tracking and guiding the efforts of our USH family members in at least 14 states to receive similar recognition of Usher Syndrome Awareness Day. Add your state to the list! 

Click here for instructions and sample language to submit a proclamation request.


IRA CHARITABLE ROLLOVER GIFTS TO THE COALITION

Match challenge in honor of Grandparents Day, September 10

If you are 70½ years old or older, you can take advantage of a simple way to benefit the Usher Syndrome Coalition and receive tax benefits in return. You can give up to $100,000 from your IRA directly to a qualified charity such as ours without having to pay income taxes on the gift.

Your gift will be put to use today, allowing you to see the difference your donation is making.

This law no longer has an expiration date so you are free to make annual gifts to our organization this year and well into the future.

If you have not yet taken your required minimum distribution for the year, your IRA charitable rollover gift can satisfy all or part of that requirement. Learn more... 

A SPECIAL CALL OUT TO GRANDPARENTS

Grandparents Day is September 10, 2017. Thanks to a very special anonymous donor, any donations made to the Usher Syndrome Coalition on September 10th will be matched up to $10,000. Please consider being a part of this exciting opportunity. An IRA charitable distribution is a great way to support the Coalition and receive tax benefits. 


SUMMARY OF THE USH CONNECTIONS CONFERENCE

The presenters at the 9th USH Connections Conference gave us a lot of exciting information about research that is taking place right now to eventually treat and cure vision loss and balance issues associated with Usher syndrome. Read the conference transcript and check out the presentation slides from the USH Connections Conference held on July 15 in Chicago. Attended by nearly 300 people from 29 states in the U.S. and 5 additional countries came, USH2017 was an incredible day filled with "realistic hope" in research towards a cure, and empowering connections made with friends, new and old. 

Save the Date for USH2018: International Symposium on Usher Syndrome and the 10th Annual USH Connections Conference | July 19-21, 2018 | Mainz, Germany


SHREWSBURY LION'S CLUB CHARITY GOLF TOURNAMENT

The Shrewsbury Lion's Club Charity Golf Tournament is Saturday, September 9th at Green Hill Country Club. 8 AM shotgun start; makes for a quick round. $125 donation per golfer/$500 per foursome includes golf, cart, meal (lunch) and gift bags. The event benefits sight, sound and diabetes research. They have been a huge supporter of the Usher Syndrome Coalition in the past. If you are in the Boston area, start organizing with your friends, coworkers and neighbors and contact David Petkauskos at shrewsburylionsclub@gmail.com.  

Also, a big thank you to the Plymouth Lion's Club for their generous support over the past year!

If you have a connection to a Lion's Club in your area and would like to learn about ways to support the Usher Syndrome Coalition, please contact Julia at j.dunning@usher-syndrome.org.


THE USH TRUST REGISTRY IS NOW IN GERMAN!

Just in time for USH2018 in Germany...the Usher Syndrome Coalition is pleased to announce that the USH Trust registry is now available in German.

The USH Trust registry is exclusively for individuals with Usher syndrome, worldwide. When you join the USH Trust, you will be the first to know about clinical trials. The Usher Syndrome Coalition is the bridge between you and the research community. Connecting individuals and researchers is crucial to furthering our understanding of the disease, advancing research, and providing hope for the future.

We urge you to consider participating. You are the key to finding treatments and a cure.

Many thanks to Dominique Sturz: d.sturz@utanet.at for these German translations!

Questions? Contact Nancy O’Donnell, Director of the USH Trust registry at n.odonnell@usher-syndrome.org

NEU! NEU! NEU!: DAS USHER SYNDROM REGISTER IN DEUTSCHER SPRACHE

USH Trust - Deutsche


SENATE PASSES THE OVER-THE-COUNTER HEARING AID ACT

The U.S. Senate passed the Over-the-Counter Hearing Aid Act of 2017. With this groundbreaking legislation, Congress has sent a message to America that people with hearing loss need – and deserve – more affordable and accessible hearing health care.

The Over-the-Counter Hearing Aid Act of 2017 would make certain types of hearing aids available over the counter to adults with mild to moderate hearing loss. In addition, the proposed legislation would require the Food and Drug Administration (FDA) to regulate this new category of OTC hearing aids to ensure they meet the same high standards for safety, consumer labeling and manufacturing protection that all other medical devices must meet. This will give consumers the option to purchase a safe, high-quality FDA-regulated device at lower cost. Learn more...


DBI PRE-CONFERENCE ON USHER SYNDROME

September 3-4, 2017, Aalborg, Denmark

DeafBlind International announces the DBI Usher Network Pre-Conference Seminar "Building Blocks of Social Connectivity" in Aalborg, Denmark on September 3rd and 4th, 2017. This pre-conference will provide a fantastic opportunity for people to share ideas, research and network within the sphere of Usher syndrome. Click here for the Pre-conference flyer or here to register.


LATEST USH TALKS

USH Talks deliver the latest in research developments and community stories directly to you.

Research Updates:

Gene Therapy for MYO7A USH1B | June 27, 2017: This USH Talk summarizes efforts to develop a dual AAV vector-based gene therapy for Myosin7a Usher syndrome (USH1B). The drawbacks of USH1B mouse models and a rationale for testing these vectors in a more clinically relevant species are discussed.

Genetic Testing: The USH2A Gene | May 30, 2017: This USH Talk explains genetic testing of the USH2A gene, as conducted at the Radboud University Medical Center in Nijmegen, Netherlands.

Genetic Testing for Usher Syndrome, Valencia, Spain | May 2, 2017: Dr. Gema García-García shares strategies for the molecular diagnosis of Usher syndrome used at the Health Research Institute Hospital La Fe in Valencia, Spain.

All USH Talks: View our full USH Talk Library on our website, or search all USH Talk text and audio on Panopto.

Subscribe to USH Talks: To subscribe using iTunes, click here. Even easier, search for 'USH Talks' in the Podcasts app on your iPhone or iPad. You can also subscribe to RSS here.


RECENT USHER SYNDROME BLOG POSTS

ENHANCED SCIENCE COMMUNICATION FOR THE USHER COMMUNITY: CAN YOU FEEL IT? | June 6, 2017 by Jennifer Phillips, Ph. D.
If you’ve followed any of my involvement with the Usher community over the years, from blog posts to ARVO updates to speaking at our family conferences and making dorky USH Talk videos, it should come as no surprise to you that I’m a big proponent of science communication and outreach. Read more...

CLICK HERE TO READ OLDER USH BLOG POSTS. 


 

APPLE AND COCHLEAR TEAM UP TO ROLL OUT THE FIRST IMPLANT MADE FOR THE IPHONE | Published July 31, 2017
Approved by the U.S. Food and Drug Administration in June, Cochlear’s Nucleus 7 Sound Processor can now stream sound directly from a compatible iPhone, iPad or iPod touch to the sound processor.

RESEARCHERS UNLOCK REGENERATIVE POTENTIAL OF CELLS IN THE MOUSE RETINA Published July 28, 2017
Nikolas L. Jorstad, Matthew S. Wilken, William N. Grimes, Stefanie G. Wohl, Leah S. VandenBosch, Takeshi Yoshimatsu, Rachel O. Wong, Fred Rieke, & Thomas A. Reh

NEI-funded researchers use a clue from zebrafish to discover the cues that reprogram Müller glia into retinal neurons.

RESCUE OF PERIPHERAL VESTIBULAR FUNCTION IN USHER SYNDROME MICE USING A SPLICE-SWITCHING ANTISENSE OLIGONUCLEOTIDE | DRUG-BASED THERAPY Published June 19, 2017
Sarath Vijayakumar, Frederic F. Depreux, Francine M. Jodelka, Jennifer J. Lentz, Frank Rigo, Timothy A. Jones, Michelle L. Hastings

These findings provide the first direct evidence of an effective treatment of peripheral vestibular function in a mouse model of USH1C and reveal the potential for using antisense technology to treat vestibular dysfunction.

WHAT CURING DEAF MICE'S HEARING MEANS FOR HUMANS | Published May 21, 2017
Scientists at the Boston Children’s Hospital, Massachusetts Eye and Ear and Harvard Medical School have spent several years refining a technique to repair one of the common genetic disorders that cause deafness, offering hope to millions. The genetic disorder they repaired is Usher syndrome. 

CLICK HERE TO READ ALL ARCHIVED SCIENCE NEWS.


ADDITIONAL RESOURCES

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

The USH Trust and USH Blue Book

USH Blue Book Online Forum This private email group was created to provide a way for individuals in our USH Trust and the USH Blue Book to communicate with each other about topics related to Usher syndrome. The group's posts will be saved for future reference, creating a growing body of information from YOU.

Unraveling USH: A Genetic Testing Initiative - Get Genetic Testing

The Usher Syndrome Coalition website

blog on Usher syndrome issues

Facebook and Twitter

Advocacy efforts to increase the visibility of Usher syndrome on Capitol Hill and at the National Institutes of Health (NIH)

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


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


QUESTIONS?

CALL US

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

Toll: 1-978-637-2625

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

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