What's New with USH, November 2015

November 10, 2015


MESSAGE FROM THE CHAIRMAN

It is difficult to contain my excitement and not ramble on about our accomplishments, but we have so much to tell you about in this newsletter that I have to keep it quick. The Usher Syndrome Coalition has done a lot in the last few months; from a rousing family conference in New Orleans to a vibrant Own the Equinox Usher syndrome awareness day campaign that spanned the globe. We’ve gained the support of Governors and Senators and Representatives in the US. We’ve connected with Parliaments in Europe. It feels as if this community is growing exponentially. So I will let you get to the good stuff quick. Just know that thanks to you we are reaching and helping more people than ever before; those with Usher and those doing and supporting research. And, with your continued energy and backing, we plan to do even more in the coming months. It is an exciting time for the Usher Syndrome Coalition and this Usher syndrome community! 

Mark Dunning


USHER SYNDROME AWARENESS ACROSS THE GLOBE

SAVE THE DATE FOR OUR NEXT USHER SYNDROME AWARENESS DAY: 
Saturday, September 17, 2016 #USHEQX   

On September 19, 2015, something special happened. A few more newly diagnosed families learned that they are not alone. A few more elected officials learned about the most common cause of combined deafness and blindness. Members of our USH family ran marathons, mile-a-thons and media campaigns, all in the name of Usher syndrome. On September 19th, the need for a global Usher Syndrome Awareness Day became a reality. On this day, we refused to let the sun go down on USH, pushing off the darkness, as people spread the word from Australia to Alaska, Dublin to Denver, Holland to Hammond, Indiana. We demonstrated the power to make the impossible possible, turning an otherwise typical day into 31 hours in which the world got a chance to meet the Usher syndrome community. 

Thanks to you and everyone who helped Own the Equinox, we raised over $50,000 to accelerate research into treatments for Usher syndrome. Above all, you strengthened our growing community and brought Usher syndrome closer to widespread recognition. 

With your help, we will Own the Equinox again next year, and every year until Usher syndrome is history.


USHER SYNDROME FAMILY CONFERENCE - SAVE THE DATE

The 8th Annual Usher Syndrome Family Conference advertisement. The Space Needle in Seattle is pictured next to the words.

Did you miss USH2015 in New Orleans? Check out the transcript and presentations from Dr. Jennifer Lentz and Dr. Nicolas Bazan of LSU Health New Orleans and Ben Shaberman of Foundation Fighting Blindness.

Some things attendees loved most about the USH2015 Family Conference:

"Finding out that we are not alone in this battle." 

"Getting to know/see the researchers who are working hard to try and preserve our eyesight." 

"Loved the energy and the family connections." 

"It was my first experience in having interaction with others like me so I enjoyed everything and the feeling that I'm not alone." 

These one-day annual family conferences are the largest gatherings in the Usher community. They're an incredible opportunity to learn the latest on the management and developing treatments of Usher syndrome, while connecting with others in your USH family and many of the leading Usher syndrome researchers in the world. We hope you'll join us in Seattle next year!

8th Annual Usher Syndrome Family Conference

Saturday, July 9, 2016

Seattle, Washington

 #USH2016 | More details to follow


USH ACTION ON CAPITOL HILL

REPORT LANGUAGE TO PRIORITIZE USHER SYNDROME RESEARCH

In our effort to increase federal funding for Usher syndrome research, we were able to get report language into both the House and the Senate Labor, Health and Human Services (LHHS) FY2016 appropriations bills. LHHS is the subcommittee that funds the National Institutes of Health (NIH). The House and Senate also propose $1.1 and $2 Billion FY2016 increases to NIH, respectively.

The following language was included in the FY2016 Senate LHHS Appropriations Bill (report not yet publicly available):

Under the National Eye Institute section in the Senate LHHS Report (page 96), the language reads:

Usher Syndrome.-- The Committee urges NEI to continue to prioritize research on Usher syndrome, the leading cause of deaf-blindness.

Under the Office of the Director section (page 109-110), the language reads:

Usher Syndrome.-- As the most common cause of combined deafness and blindness, Usher syndrome is an important research area for multiple NIH Institutes. The Committee commends NIH for including Usher syndrome on the Estimates of Funding for Various Research, Condition, and Disease Categories list to track the annual support level of this rare disease. The Committee urges NIH to prioritize Usher syndrome research at NIDCD and NEI. The Committee requests an update in the fiscal year 2017 CJ on the planned and on-going activities related to this syndrome, including the manner in which various ICs coordinate on common goals and objectives.

The following language can be found in the FY2016 House LHHS Appropriations Bill:

Under the NIH Office of the Director (page 80):

Usher Syndrome.--The Committee continues to encourage support for research activities to prevent and correct the health related issues of Usher Syndrome. The Committee requests an update in the fiscal year 2017 budget request on the planned and on-going activities related to this syndrome. The update should address the funding level and manner in which the various ICs coordinate on common goals and objectives.


RECENT USHER SYNDROME BLOG POSTS

Fine | October 26, 2015 by Mark Dunning

'We were fine because we chose to be fine.' Read more...

Doing the Math | October 9, 2015 by Mark Dunning

There is a formula for finding treatments for Usher syndrome and getting them into the clinic. Mark knows because he just made it up. Read more...

Crossing the Street | Lessons from a Self-Advocate with Usher Syndrome | September 30, 2015 by Kerry Thompson

Kerry Thompson shares her story about the challenges she has faced living with Usher syndrome, and how her family has played an essential role in her success. Read more...

Own the Equinox Blog Series, Days 1-26 | August 25 - September 19, 2015 

Our #USHFamily has some incredible stories to share. Check out how people around the globe chose to Own the Equinox for USH awareness. Read more... 

CLICK HERE TO READ OLDER USH BLOG POSTS 


RESEARCHER ALERT

DOD VISION RESEARCH PROGRAM FUNDING ANNOUNCEMENT

On October 13, the Department of Defense (DOD) released its FY2015/2016 Vision Research Program (VRP) Funding Announcement expected to total almost $20 million, with a Letter of Intent due by December 2, and a full application by December 16:

  • A Technology/Therapeutic Development Award (TTDA), which is expected to fund four awards for a total of $6 million, and 
  • Clinical Trial Award (CTA), which is expected to fund four awards for a total of $12 million.

Research into ocular damage that occurs in the general public will also be considered, as there may be similarities and related treatments in the two populations.

For more information and individual Program Announcements, click here.


USH FAMILY NEWS

AVA'S VOICE RED CARPET GALA & BENEFIT 

If you're in the New Jersey area, you are welcome to join your ‪#‎USHfamily for the first annual gala of Ava's Voice this Sunday, November 15th. Proceeds will support their mission to provide financial assistance and support to families affected by hearing and/or vision loss, to advance the understanding of hearing and vision loss through funding research, and to provide resources and education to the public about hearing and vision loss.

Learn more: www.avasvoice.org

An advertisement for Emma's Hearing Hats. Four pictures of the hats next to the words. One picture is of a little girl wearing an orange hat.

EMMA'S HEARING HATS

Emma's Hearing Hats has launched their line of handmade knit hats for infants and toddlers who wear hearing aids. Check out their collection that ensure hearing aids stay put. HALF of all proceeds from Emma’s Hearing Hats will go to the Usher Syndrome Coalition to support our efforts to raise awareness and accelerate research.


INTERNATIONAL USHER SYNDROME REGISTRY

The Registry aligns nearly 920 registrants from 46 countries with the latest advances in research and treatment. The Registry is now available in DutchSpanishHebrew and English, with more translations in the works.

Researchers believe that building a bigger pool of people with Usher syndrome will be the best way to ensure treatments make it to clinic. Expanding the Usher Syndrome Registry is an integral step in the search for a cure.

Through the registry, we've been able to support several studies that needed access to people with Usher syndrome. The more people we have in the registry, the more researchers will come to us and the closer we'll be to a cure.

Join the Usher Syndrome Registry here, or encourage family members, friends and patients to join. You are the key to finding a cure.


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.


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


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?

Contact us at +1-978-637-2625 or email Krista Vasi at k.vasi@usher-syndrome.org

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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