Usher Syndrome Society

Thank you Corderman & Company, Inc. and JLL for continuing to help us Shine a Light on Usher syndrome! We are so grateful for your support. You can learn more about our Shine a Light on Usher syndrome exhibit here: https://lnkd.in/ewD8QrPg

We’re honored to feature personal fundraisers from individuals and families in our Usher syndrome community, each raising money for critical research, some focused on their specific USH subtype. These deeply personal campaigns offer a window into the challenges and triumphs of living with Usher syndrome and remind us that together we can make a difference. You can find all of these personal fundraiser pages on our website at https://lnkd.in/eXj8uZTD #Fundraisers #UsherSyndrome #Awareness #Research #Cure #USH #DeafBlind #Nonprofit #Donate #Community

In 2020, we partnered with Gap for International Women's Day to amplify Rebecca Alexander, LCSW-R, MPH, RYT, PLLC's powerful mantra, "Breathe in peace, breathe out fear." This message, alongside her remarkable leadership, embodies the spirit of #AccelerateAction that fuels our mission. We strive to accelerate research, treatments, access to resources, and the building of a strong, supportive community for those living with Usher syndrome. Every second counts in our pursuit of a world where everyone thrives. On this IWD, let's honor the power of action, the resilience to persevere, and the critical importance of fostering strength in our community. #InternationalWomensDay #IWD #UsherSyndrome #USH #Nonprofit #BreatheInPeaceBreatheOutFear #DeafBlind #Gap #Commercial #Awareness [Video Description: Rebecca Alexander and Hannah Corderman are featured trying on items from the special Breathe in Peace, Breathe Out Fear GapFit Collection in 2020. At the end of the video, Hannah rests her head on Rebecca’s shoulder.]

This is just one story of what it’s like to live with Usher syndrome. Usher syndrome is the leading genetic cause of combined deafness and blindness. Learn more about how we are working to raise awareness and research funds for all types of Usher syndrome at https://lnkd.in/dnWPhSA4 #RareDiseaseDay2025 #RareDisease #USH #UsherSyndrome #DeafBlind #Film #Awareness #Research #Nonprofit

This morning we had the pleasure of attending the 2025 Impact Awards hosted by Givsly to celebrate the incredible work done by Initiative to give visibility to our Every Second Counts Campaign. We are psyched to share that Initiative was selected as the WINNER in the Resourceful Responsibility category for their partnership with the Usher Syndrome Society on our Every Second Counts campaign!! As a small non-profit working to raise awareness and research funds for a rare disease, the Usher Syndrome Society has limited resources available to execute large scale awareness campaigns. With the help of Initiative – and in particular, Shannon von Hassel – we have been able to harness the power of digital media to bring unprecedented awareness to Usher syndrome. This awareness has made a staggering impact on Usher syndrome, allowing us to continue funding our Translational Research Grants with researchers around the world working on developing treatments for Usher syndrome, and also providing us with enough funding to launch PUSH (The Pipeline for Usher Syndrome Research), an innovative and collaborative research program that brings together world class scientists to address multiple forms of Usher syndrome. We are so grateful for the generosity, open-mindedness, and unwavering support demonstrated by the Initiative team over the last few years of our partnership and we cannot wait to keep making a difference with you! #2025ImpactAwards #NonProfit #ResourcefulResponsibility #UsherSyndrome #RareDisease #USH #Research #PUSH #Media #EverySecondCounts #DeafBlind #Awareness #RareDisease #Campaign

2024 has been quite the year for us! Here are just some of our major accomplishments this year: ?? Hosted TWO Conversations with USH events moderated by Rebecca Alexander, LCSW-R, MPH, RYT, PLLC - one in in Phoenix, AZ with Brenden Sorensen and another in Potomac, MD with Becca Meyers ?? Executed a full website redesign with the help of Carbon ?? Launched our Every Second Counts campaign with the help of Initiative and Shannon von Hassel on NINE Times Square billboards, digital streaming services nationwide, and out-of-home digital platforms ?? Won GOLD in the media Charity/Not-for-Profit category of the The Drum Awards ?? Featured on the The Today Show with Rebecca Alexander, LCSW-R, MPH, RYT, PLLC and Peter Alexander ?? Added over 30 new portraits to our Shine A Light on Usher Syndrome traveling global exhibit at the Usher Syndrome Coalition Connections Conference in Rochester, NY with the help of photographer Lauren Petracca ?? Brought our Shine A Light on Usher Syndrome Exhibit to lobbies across the city of Boston as part of our Lobby-ing for USH Campaign in collaboration with Corderman & Company, Inc. ?? Hosted our largest annual Sight, Sound, & Strength fundraiser so far at Topgolf Boston-Canton ?? Raised over $1 million for Usher syndrome research ?? Launched the groundbreaking Program for Usher Syndrome Research (PUSH) at Boston Children's Hospital ?? Committed over $3.5+ million in total towards Usher syndrome research As we reflect on all that we’ve accomplished together in 2024, one thing is clear: the future of Usher syndrome is changing because of you. This year has been a testament to the incredible impact of collective effort and shared purpose & we cannot thank you enough for helping us make every second count this year. If You Haven’t Given Your Donation This Year, Please Consider Giving Today! https://lnkd.in/ehpA9pQK #2024Recap #USH #UsherSyndrome #Research #Awareness #RareDisease #DeafBlind #Nonprofit #Community #Commercial #TimesSquare #Campaign #EverySecondCounts #SightSoundStrength #Fundraiser #PUSH

Last Tuesday we hosted our annual Sight, Sound, & Strength fundraiser at Topgolf Boston-Canton! With over 250 attendees and volunteers, this was our biggest event yet and we are tremendously grateful for all of the support shown by our generous sponsors and everyone who participated, giving us hope that we can change the future of Usher syndrome. A special thanks to our featured speaker, Kevin Frost, for sharing such powerful insight about his experience as an athlete living with Usher syndrome and to Topgolf for being so accommodating and helping us create a fun and impactful evening! Our Event Sponsors: Master Sponsors: James W. Flett Co., Inc. , MTech NE , J & M Brown Company, Inc., Corderman & Company, Inc., Berkshire Bank Eagle Sponsors: CAUSEWAY CONTRACTING, Watson Brothers Inc, Jc Floors, Davis Architectural Woodworking Inc, Prestige Fire Protection Group, Stride Consumer Partners Birdie Sponsors: Holt Geleoc Lab, Skanska, McAdam Painting, Arch Street Glass, E. H. MARCHANT CO., INC., The Pappas Company Par Sponsors: Contract Flooring, M. L. McDonald Sales Company, LLC, Brian T Malone Company, SOS Corporation, Atlantic Power and Light, Translational Hearing Genomics Lab at Boston Children's Hospital Fairway Sponsors: AGC MA, LARKIN PAINTING, INC., Sullivan Insurance Group, Allegheny Contract Flooring, Inc., Northeastern Mechanical, Managed Wealth Strategies #SightSoundStrength #UsherSyndrome #Event #Awareness #Research #Treatments #RareDisease #Fundraising #Boston #Golf #DeafBlind #NonProfit

It's #GivingTuesday and we are proud to announce the launch of our groundbreaking research initiative: PUSH - the Pipeline for Usher Syndrome Research at Boston Children’s Hospital. PUSH brings together six world-class scientists—leaders in their fields—at one academic institution to accelerate treatment development for Usher syndrome (USH). This innovative program uniquely tackles multiple forms of USH in parallel, identifying specific subtypes and mutations that could respond to cutting-edge therapies. While labs worldwide are working tirelessly on USH treatments, PUSH stands out as the first collaborative effort of this scale, designed to speed up the journey from research to clinical application for various types of Usher syndrome. Learn more and donate here: https://lnkd.in/ehRfGdjs #PUSH #Research #UsherSyndrome #Nonprofit #RareDisease #DeafBlind #BostonChildrens #USH #Awareness #Treatments #Cure #Pipeline #Donate?

Today, as we reflect on this monumental year of awareness and fundraising, we are especially grateful for the overwhelming support we’ve received from all of you! From launching our powerful Every Second Counts campaign in Times Square & showcasing a national commercial to hosting impactful local events across the country, we are so proud of the strides we’ve made to advance Usher syndrome research and make this invisible disease visible. None of this would have been possible without your support. Thank you! #USH #UsherSyndrome #Awareness #Grateful #Thanksgiving #Thankful #Support #Nonprofit #Research #RareDisease #EverySecondCounts?

We are beyond thrilled to announce that our Every Second Counts campaign has won GOLD in the Media: Charity or Not-for-Profit category at The Drum Awards! ?? The Drum Awards is a prestigious global program that celebrates the best in marketing and communications worldwide. This incredible recognition means so much to us as we continue to raise awareness for Usher syndrome. A heartfelt thank you to Initiative for their dedication and hard work in bringing this campaign to life, and a special shoutout to Shannon von Hassel on the Initiative team for her incredible efforts. We are also deeply grateful to Rebecca Alexander, LCSW-R, MPH, RYT, PLLC, the inspiring and powerful face of this campaign, as well as our brilliant creative team: Bart Baldwin, Ryan S. Porush, Liz Padilla, and Jason Losser. Your creativity and talent has helped to amplify our mission in ways we couldn’t have imagined. And of course, a tremendous thank you to everyone who has supported this campaign and who continue to help us make Every Second Count. #DrumAwards2024 #EverySecondCounts #UsherSyndrome #USH #Award #Media #Nonprofit #Commercial #TimesSquare #DeafBlind #Awareness #Research #RareDisease?