The Future depends on the Present.

We begin by expressing our immense gratitude to the families who provide their support and are part of this project. We extend our thanks to those who have recently joined and are already planning events or actions. We also acknowledge those who have exhibit remarkable activity, dedicating their time and efforts to raise awareness and fundraising. We appreciate those of you who follow our journey and are resolute pushing forward with your families. To all of you, thank you. As always, we remain available and committed to working together towards progress.

Our growth continues as we established our presence in Spain. This expansion has been accompanied by the initiation of novel initiatives designed to create awareness about our cause and generate funds for research teams.  

Among the many activities that have taken place, Leo's family has been actively involved in various events over the past months. Their enthusiasm and dedication are inspiring examples for all of us.

Eric's parents have taken the initiative to organize a concert in Valladolid for the upcoming autumn-winter season. This event holds the promise of being a special occasion that brings together music and solidarity. Felix's family continues to rally their community in Switzerland, effectively raising funds for Usher 1B. Additionally, Jordi's family, who recently joined our community, is already organizing a range of actions.

As an organization, we have ideas for activities that have already proven successful, such as The Usher Race. These initiative can be replicated and customized in various locations. By working together to increase visibility of Usher and orchestrating beautiful and motivating activities, we can not only raise substantial funds for research projects (both in Europe or in line with the Foundation Fighting Blindness' initiatives in the United States), but also make society aware of our existence and garner their support.

It is through our collaborative spirit and shared social commitment that we can amplify our community and accelerate our path toward Usher syndrome treatment. Cultivating awareness about Usher within society is crucial to securing the necessary support. Together, we can reach our goal faster: discovering a cure for retinitis pigmentosa that afflicts our loved ones.

Let's work together to make a difference!

Meet Chloe

Meet Jordi

Meet David

Meet Mariella

We are delighted and proud to announce that Usher 1B (MYO7A) has been included in the genes studied by Uni-Rare clinical trial, made possible by the participation and funding from Save Sight Now.  

This natural history initiated by the Foundation Fighting Blindness aims to deepen our understanding of Usher 1B and its progression. This comprehensive insight will support regulatory authorities in making more informed decisions when it comes to approving treatments.

Pharmaceutical companies and researchers will gain a better understanding of Usher 1B, potentially inspiring encouraging to invest their time and resources into the development of treatments or repurposing existing ones if they prove effective for combating the Retinitis Pigmentosa.

The greater the volume of data we collect, the more impactful its value becomes. This highlights the importance of enrolling in this study for those of us who are eligible. Enrolling will require visiting one of the designated study centers and undergoing the tests prepared for data collection. This commitment entails around 4 to 5 hours per year for four years. Study centers are available across various locations, including the United States, Mexico, the Netherlands, Switzerland, and the United Kingdom.

Let's make Usher 1B matter and get involved in finding a treatment.

Each single enrolment matters and together, we can mage a great impact.

If you or a family member is affected by Usher 1B and are eager to find a treatment,

enroll now!

We have identified inaccuracies int the hospital contact details and enrollment statuses. We are currently in the process of verifying these details and will provide you with updates as soon as possible.

June 6 marked a significant milestone on our journey, and we are thrilled to share this news with all of you: we are delighted to announce the official establishment of our Foundation in Spain.

The establishment of the Foundation marks a significant advancement, providing us with a robust structure across the entire Spanish territory. This framework allows us to extend our reach with hospitals, collaborate effectively with organizations and research teams, access awards and grants, and offer tax exemptions to individuals and companies for their donations. It serves as a foundation to unite efforts and provide families with a reference point to find support, collaborate, and drive the Usher community toward finding treatment for our loved ones.

This achievement is a direct results of the unwavering effort and dedication of numerous individuals that passionately have contributed to this cause. Families impacted by Usher syndrome, healthcare professionals, researchers, and volunteers have all played integral roles in reaching this milestone. We extend our gratitude for their support.

The Foundation aspires to become a beacon of support for families coping with Usher 1B syndrome in Spain, guiding them through the challenges posed by this disease in their daily lives.

We are profoundly honored by the trust you have placed in us. Now, our organization is better equipped to drive significant research progress on both European and international levels. In the near future, we will be able to announce the subsequent programs that we will be sponsoring.

We invite all who share our vision to join us on this journey. Your support is pivotal to our cause. Together, we can drive progress and build a future full of hope and light.

We visited the IOB

Institute of Molecular and Clinical Ophthalmology Basel

Recently, we had the privilege of visiting the Institute of Molecular and Clinical Ophthalmology Basel (IOB) to engage with the research team led by Botond Roska, Bence György, and Giacomo Calzetti.

The IOB is a center of excellence dedicated to studying and treating ocular diseases, including Usher syndrome. Under the direction of renowned professors Botond Roska and Hendrik Scholl, the institute has established itself as a front line in the research and application of innovative therapies. Its multidisciplinary approach and commitment to international collaboration have led to significant advances in ocular genetics and vision-related diseases.

Our visit granted us the opportunity to exchange insights and experiences with the IOB research team. During this interactions, we discussed the latest advances in therapies for inherited retinal dystrophies (IRDs). Dr. Bence György and Dr. Giacomo Calzetti recognized figures in ocular genetics research, shared their discoveries and discussed therapeutic pathways to explore.

Observing the efforts and commitment of the IOB to enhance the understanding and treatment of Usher syndrome is truly inspiring. Collaboration between researchers, physicians, and patients is crucial in developing therapies.The IOB's enthusiasm for building a collaborative network with patients underscores their commitment. We are profoundly grateful for our interaction with the IOB and its researchers. Their dedication gives us hope and motivates us to continue our work.

EURORDIS Open Academy School

Barcelona, June 19-23, 2023

During June, we had the privilege of participating in the latest edition of the EURORDIS Open Academy School on Medicines Research & Development, a comprehensive course centered on medicine research and development.

EURORDIS is an organization formed through the alliance of European patient organizations, including Save Sight Now Europe, in their mission to bolster, equip, and empower patients, families, and representatives dealing with rare diseases across Europe.

The EURORDIS Open Academy stands as a distinguished platform in the realm of rare diseases, fostering an enhanced understanding of the multifaceted dimensions of these conditions and the intricate processes involved in discovering treatments. This program takes a multidisciplinary approach, weaving together the expertise of professionals, researchers, healthcare practitioners, and individuals directly impacted by rare diseases.

Our participation in the school has been an enlightening journey. It has provided us with a greater comprehension of diverse avenues for activation. Moreover, it has facilitated connections with key stakeholders within the European landscape, spanning from pharmaceutical research to regulatory entities. The insights gained during this experience will enhance our effectiveness in collaborating with research teams, organizations dedicated to inherited retinal dystrophies, and competent authorities.



We are grateful for the enrichment this opportunity has brought to our mission. The knowledge gained projects us forward with renewed vigor as we continue our dedicated work.

In May, we launched the Spanish-speaking version of F2F (Family-to-Family Meetings) in collaboration with Usher Kids UK, Usher Syndrome Ireland, Usher Kids Australia, and Ava's Voice organizations.

These meetings serve as a platform to unify the community and create a trusting environment where families can freely exchange insights and receive support.

The inaugural meetings have enjoyed great success, motivating us to refine and enhance this platform to provide each participant with an enriching and meaningful experience. During the summer, we've expanded our activities to incorporating a talk on nutraceuticals, providing vital knowledge about nutrition's significance in relation to health within Usher syndrome.

Our commitment remains strong, and we are thrilled to continue advancing the development of F2F Meetings.

We are excited about the prospect of growing together and establishing a robust support network for families worldwide who are integral to the Usher community and actively engage in F2F Meetings.

On another note, the event "La Cara B" took place in Amposta clubs, where 10% of the proceeds were dedicated to Save Sight Now Europe.

From the Solidarity Run at Instituto de Deltebre, La Mescla, La Cara B, The Usher Race, (Mis)Communication, Festival Menuts, activities with the bullfighting club Mai Acabem, Wakeboarding, and the growing solidarity piggy banks in Deltebre, along with upcoming concerts and other initiatives, these activities do more than just raise funds. They also cast a spotlight on Usher syndrome, increasing awareness about its impact on those affected by it.

These events stand as a testament to the commitment and solidarity exhibited by numerous individuals in the fight against Usher syndrome 1B and in support of Save Sight Now Europe. We extend our heartfelt gratitude for your trust. The journey toward treatment is one we undertake united, fortified by a resilient, engaged community. So, we urge you not to hesitate; every contribution, no matter how small, plays a role in safeguarding the vision of your children, grandchildren, nieces, nephews, or the children of your friends.