What's New with USH, August 2014
August 6, 2014
MESSAGE FROM THE CHAIRMAN
The International Symposium on Usher Syndrome and Family Conference was the largest gathering of the Usher syndrome community ever. Three days, four nights, nearly fifty speakers, dozens of interpreters, and more than three hundred attendees. The International Symposium on Usher Syndrome, #USH2014, is now history.
The search for viable Usher treatments is moving ahead by leaps and bounds and just about everyone left the symposium filled with hope and enthusiasm. Here's a summary of the science presented. If you weren't able to attend, or you want a refresher, you can access many of the presentations here, and a transcript from the Family Conference here.
We want to improve these gatherings year after year, so we need to hear from you. Fill out our post-conference survey to provide your feedback. Still catching up on the connections you made at USH2014? At the end of the survey, you can also opt-in to have your contact information shared with your fellow attendees.
USH2014 created lasting memories and lofty goals. This is only the beginning. With your help, we will continue to build the powerful force that is the Usher Community. We can't do it without you. Please consider a gift to the Usher Syndrome Coalition to help continue this important work.
Thank you for believing in our mission and for helping spread the word about Usher syndrome. Together we are making a tremendous difference. Let's keep it going!
Mark Dunning
DONATE TO USH BY SHOPPING ON AMAZON
Supporting the Usher Syndrome Coalition can be as easy as shopping online. When you click through our website to shop on Amazon, they know you came through us and will donate 4 to 8% of your purchase to the Coalition.
Even better, when you click through our site and shop on AmazonSmile, Amazon donates an additional 0.5% of your purchase.
AmazonSmile is the same Amazon products, prices, and service you already know. Log in using your Amazon log in and choose "Coalition for Usher Syndrome Research" (soon to be "Usher Syndrome Coalition") as the charity of your choice.
Head over to our website to get started. Happy shopping!
#USH2014 - ROAD TO THE SYMPOSIUM
Back in May, we invited you to join our digital efforts - #USH2014 - Road to the Symposium. In the months leading up to the event, we announced four Community Goals:
- Increase our email list to 1200 connections.
- Grow our Facebook community to 800 fans.
- Educate supporters about the Symposium and Family Conference.
- Recruit new messengers and advocates to the Usher syndrome community.
It's safe to say we achieved each of these objectives. We surpassed our goal of reaching 800 supporters through our Facebook page (876 likes and counting), the hashtag #USH2014 was used 175 times by various tweeters (challenge accepted, #USH2015), and in the days after the conference, we saw our mailing list increase to EXACTLY 1200 contacts. How's that for hitting goals?
USH ACTION ON CAPITOL HILL
Over the past few months, the Coalition has continued to highlight the urgent need for increased federal funding towards Usher syndrome research. We held a meeting with the White House's Office of Management and Budget seeking advice on bringing more attention to Usher research.
We also got the following report language into the Senate's FY2015 Labor, Health and Human Services, and Education (LHHS) funding bill, approved by the Subcommittee on June 10, 2014:
NATIONAL EYE INSTITUTE
Usher Syndrome. - The Committee urges NEI to put a higher priority on Usher syndrome, the leading cause of deaf-blindness.
NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS
Usher Syndrome.- The Committee supports research into the prevention and treatment of Usher Syndrome, including research that will lead to improved genetic counseling, early diagnosis, and eventually expanded treatment options for individuals suffering from severe hearing and vision loss. The Committee requests an update in the fiscal year 2016 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.
Stay tuned. When Congress is back in session in September, we'll call on you to reach out to your representatives.
USHER SYNDROME REGISTRY
The Registry aligns nearly 600 registrants from 32 countries with the latest advances in research and treatment. The Registry is now available in Dutch, Spanish, Hebrew and English, with more translations in the works.
The greatest fear expressed by researchers at the International Symposium on Usher Syndrome was not that we would fail to find treatments. They are confident that they will. It's that they would fail to get them through clinical trials because we are not in touch with enough Usher families. Building the Usher Syndrome Registry is a crucial step towards resolving this problem, and our top priority coming out of this meeting.
Join the 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 includes 250 families from 17 countries. The goal of the family network is to connect Usher 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.
USHER SYNDROME COALITION MONTHLY CALL RETURNS
Our monthly calls continue on Monday, September 8, 2014 at 1:00 PM Eastern Time, as we're joined by Elvira and Stijn Belt, founders of Stichting MUS, our sister organization in the Netherlands.
RECENT USHER SYNDROME BLOG POSTS
Uncertainty and Uncertainty July 30, 2014 by Mark Dunning
"That future will have good things in it. It's not a given. It can't be taken for granted. But tomorrow has never been anything more than hope." Mark Dunning discusses the uncertainty that lies ahead for his family as they hope for a bright future. Read more...
Independence Day July 28, 2014 by Charlotte DeWitt
"...our society -the world's society- is not set up to allow a deaf/blind person to be fully independent, no matter how much the person wants his independence." Charlotte goes undercover as a person with Usher 1 at Boston's Fourth of July Celebration. Read more...
Molly's Thoughts on #USH2014 July 24, 2014 by Molly Watt
"I have faith in science. In the meantime, life goes on." Molly Watt shares her take on the International Symposium on Usher Syndrome and Family Conference. Read more...
SURVEY ON SMARTPHONE USE FOR BLIND AND VISUALLY IMPAIRED
Annika Hortig, a special education student at Humboldt-Universität zu Berlin, is examining the user behavior and satisfaction of blind and visually impaired people with smartphones for her Master thesis. If you use a smartphone (IOS or Android) you can fill out an anonymous and confidential survey to help with her work. The results of the survey are intended to serve as a basis for the optimal development of the functions of the smartphone. The survey is open until August 22, 2014.
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
A 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
www.usher-syndrome.org
