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Ivonne Bressers has appointed a knight of the Order of Oranje-Nassau.

Mayor Ahmed Marcouch and Ivonne Bressers

King Willem-Alexander has appointed Ivonne Bressers (57) a knight of the Order of Oranje-Nassau. As president of the Dutch Usher syndrome Foundation and the driving force behind it, she is of inestimable value to the Usher patient group. Mayor Marcouch presented the award during the “lintjesregen” at the City Hall in Arnhem.

Ivonne Bressers has Usher syndrome. Most people with this very rare disorder are born hearing impaired or deaf and experience progressive sight and hearing loss. There are 400,000 patients worldwide, including 1,000 in the Netherlands who suffer from Usher syndrome. There is currently no treatment to stop the process of becoming deaf and blind. Ivonne’s deepest wish is that in 2025 there will be a treatment for every Usher syndrome patient.

Ambitious volunteer
From 2009 to 2015, Ivonne volunteered tirelessly and unpaid for the interests of the deafblind patient group. She participates as a volunteer in various working groups of the Eye Association OOG & OOR and makes great strides. With her project group, she managed to ensure that the second cochlear implant (an implanted hearing prosthesis) for deafblind people is fully reimbursed by health insurers. She also initiated the establishment of a national expertise center for patients with Usher syndrome within the Radboudumc. Nowadays, these patients can come here with their specific care needs.

Usher syndrome Foundation
In 2015 Ivonne starts in the campaign team of the Dutch Usher syndrome Foundation and joins as general board member in 2016. In 2019, she is appointed president of the foundation. A task she performs with enthusiasm, dedication and vigor.

From its inception until now, Ivonne, together with the efforts of volunteers for the Foundation, has managed to raise more than 1.1 million euros. The funds received are used to finance very promising scientific research, both at home and abroad, into an effective treatment for people with Usher syndrome.

The Royal Decoration is an extra stimulus for Ivonne to keep working on fulfilling her deepest wish: “in 2025 Ushersyndrome will be treatable for everyone”.

Run4Usher Zandvoort breaks all records!

LEES ARTIKEL IN HET NEDERLANDS

On the 27th of March, the Run4Usher team joined almost 12.000 other runners at the start of the Zandvoort Circuit Run. This beautiful spring day set the scene for one of the first major running events of the year. The Ushers Syndrome Foundation was chosen by Rotary Zandvoort as the official charity for this edition of the Zandvoort Circuit Run. Not only adults appeared at the start; for the young participants there was also a special Kids Run. The large team of Run4Usher broke all records on this wonderful day and collected the fantastic amount of € 85.427,- !

Pole Position
From Pole Position, the 185 participants of Run4Usher started the 13th edition of this spectacular running event.  The program consisted of various courses: the 10 English Mile (16.1 km), 12 km and 4 km (One Lap) and for the youngest participants there was the special Kids Circuit Run and the Wheelers and Racerunner Race. Also Carol Brill and Debs Heffernan from Usher Syndrome Ireland had been specially flown in for a one-lap track over the circuit.

In the special tent of Run4Usher at the Paddock there was the opportunity to meet each other and share the solidarity. After the Kids Circuit Run, the young participants were treated to various activities led by a large group of volunteers, there was candy floss, face painting and costumes as well as go-kart races at the Paddock.

Rijsterbij
The rapper Rijsterbij (Martijn Rijsenbrij) gave a benefit concert, selling his CDs and donating the proceeds to Stichting Ushersyndroom. Martijn Rijsenbrij sings Dutch hip-hop with solid beats. “It’s getting dark, all the lights are going out, but I’m not going to wait for the day it gets dark, to that thought I say thunder”. Martijn has the eye disease Retinitis Pigmentosa, just like all people with Usher syndrome.

All records broken
The participation and presence of the Run4Usher team did not go unnoticed and generated a lot of attention for Ushersyndrome during the event and in the media.

The proceeds for the Ushersyndrome Foundation are a record: the runners and their supporters, the volunteers who collected at the event and the additional proceeds from LeChampion and Rotary Zandvoort together raised € 85.327,- !

A long haul
For the project group, the organisation has also been a challenging time. The team that organised this edition of Run4Usher consisted of ‘Ushers’ Machteld Cossee and Carin de Bruin and ‘Usher parents’ Daan Wijsbek, Esmé Ter Stege and Liesbeth Kenters. Machteld: “I remember that in mid 2019 the first contact was made with the Rotary Club and Le Champion. We were going to watch and gain experience at Stichting Hartekind, which had been chosen as the Charity for that year, but unfortunately the pandemic threw a spanner in the works.”
Despite this, the project group continued to make plans and recorded a promo with John Williams, a Dutch celebrity. Because you never know!
Unfortunately, the 2021 edition of the Zandvoort Circuit Run was also cancelled due to corona.

Until the end of 2021, event organisation Le Champion cautiously gave the go-ahead.
“We had to switch gears for a moment and suddenly we were back in business. It took a lot of Zoom meetings and group apps to get everything right,” say parents Daan and Esmé. “Various interviews, sending out newsletters and having to arrange all the practical matters at the last minute, it was simply top-class sport! according to Carin. The ever-calm Liesbeth thinks it has been a matter of long breath. “We did it, and we did it well”. Fortunately, the project group was able to count on the support and assistance of a huge group of volunteers for the practical help.

Record proceeds
Thanks to sponsorships from runners, the sale of merchandise and volunteers who collected during the event, they managed to raise a staggering € 65.427,- !
On 11 April last, the members of the project group received a cheque from the Rotary Zandvoort and event organisation Le Champion.
This brings the total record revenue of € 85.327,- !

Thanks to the financial support of “Stichting ter verbetering van het lot der Blinden” for the incurred expenses, the entire proceeds of Run4Usher Zandvoort Circuit Run can benefit scientific research into and treatment of Usher, in order to stop the process of becoming deaf and blind. In this way, the dot on the horizon for people with Usher syndrome is coming ever closer.

Here you can see all the photos of the Run4Usher edition Zandvoort Circuit. With many thanks to photographer Sanne ter Horst.

Click me

Would you like to be part of the Run4Usher team? Or would you like to help organize the next Run4Usher edition during the Seven Hills Run (19 and 20 November) in Nijmegen? Then please contact us via the mail run4usher@ushersyndroom.nl

Moon-Rocket Grant

Usher Syndrome Foundation Grant Call:
The Moon-Rocket Grant

The use of the word ‘Ushers’ for people with Usher syndrome is meant with a wink and refers to the meaning of the English word ‘Ushers’. People with Usher syndrome are the messengers of an important story or message.

The ‘Ushers’ tell what they need, what kind of help they need, what they find important and how they experience their life with Usher syndrome.

Currently, there is no treatment available for 400.000 ‘Ushers’ in the world. What is needed for the ‘Ushers’ is more knowledge and research into the Usher Syndrome. That is why Stichting Ushersyndroom [Dutch Usher Syndrome Foundation] awards the Moon-Rocked Grant: € 100,000 for research into Usher Syndrome.

The Moon-Rocket Grant
The goal of the Moon-Rocket Grant of the Usher Syndrome Foundation is to realize our formulated moonshot: “a cure for Usher in 2025!”.

The Moon-Rocket Grant is intended to financially support research into Usher Syndrome (any form or subtype).
All research proposals submitted must fit into one of the four core values ​​the Usher Syndrome Foundation has defined by:

  • Treatment
  • Understanding
  • Diagnostics
  • Impact

The Moon-Rocket Grant will award a maximum of €100,000 per research. If there are several eligible projects, more projects can be funded. A maximum of € 200,000 is available for financing.

For more information click on the buttons below.

MOON-ROCKET GRANT FLYER GRANT CALL APPLICATION FORM

Do you have any questions or would you like to receive the application form in Word version? Mail to research@ushersyndroom.nl

1 million euro

What has Stichting Ushersyndroom [Dutch Usher syndrome Foundation] done with it?

We provide an overview and a glimpse into the future.

Mini genes USH2A
In the ‘mini genes’ project, the USH2A gene is artificially made smaller by taking specific parts of the gene and sticking these together (= minigene). This suddenly makes it possible to insert these minigenes into the current vectors for use in genetic therapy.
In this project the therapeutic effect of shortened USH2A protein variants will be tested in the zebrafish model.
The Stichting Ushersyndroom finances this study in 2016.

Read more ….

CRUSH study
The expertise centre for Usher Syndrome in Radboudumc started in 2019 a natural development study into Usher Syndrome, de CRUSH study.
This is a very important step in the research into a treatment for Usher Syndrome, because this study may substantially shorten the running time for trials. Stichting Ushersyndroom finances this five-year study.

Read more …

Mini genes USH2C

In 2019, the Usher Syndrome Foundation funded the new research into Minigenes for USH2c. USH2c is caused by mutations in the USH2c gene (ADGRV1), and these errors in the gene lead to a progressive form of hereditary deafblindness. However, this gene is very large, so researchers want to try to make an artificially shortened version of the ADGRV1 gene. These mini-genes will be small enough to fit into a ‘viral vector’, but at the same time they must also remain functional.

Read more …

Knowledge portal Usher syndrome

The Usher Syndrome knowledge portal is made available by Stichting Ushersyndroom.
A portal that has been developed for and by people with Usher syndrome in which they have bundled all their knowledge and information as experience experts and ‘Usher experts’.

Read more ….

Sleeping research
Are patients suffering from Usher Syndrome so tired because of the huge efforts made in connection with their poor hearing and eyesight or is something else going on? Researchers in the Radboudumc try to find an answers to this question. There are indications that perhaps there is more going on, a genetic cause.
In summer of 2021, the research into ‘The recognition of sleeping problems with patients with the USH2A gene’ stared. Stichting Ushersyndroom will finance a large part of this study.

Read moe ….

Database USHIII

This year in 2021, the North-American foundation Usher III Initiative has taken preliminary steps towards collecting the information necessary to establish the first comprehensive global USH3 patient database. This resource will be critical to the design of future clinical trials and will significantly advance knowledge of the disease and its impact on patients.
Stichting Ushersyndroom has committed to making a contribution to support this effort.

Read more ….

Extra large vectors on mini retinas

Stichting Ushersyndroom is funding the majority of the new research “Genetic drugs preventing blindness due to loss of USH2A function” which has recently started. The research team led by Jan Wijnholds, who works at the Leiden University Medical Center (LUMC), will test two treatment methods on ‘mini-retinas’ made from human stem cells. The researchers want to determine if the light sensitive cells in the mini-retinas can be activated by the light-sensitive cells after administration of gene therapy.

Read more ……

The dot om the horizon

The mission of the Stichting Ushersyndroom is: “In 2025, Usher Syndrome will be treatable!” This is the all-encompassing goal, the “moonshot”, from which everything else is derived. This is why Stichting Ushersyndroom is here.

  • At the beginning of 2022, Stichting Ushersyndroom will send out a call: The Moon Rocket Grant. Researchers worldwide can submit an application for a grant that contributes to the mission ofStichting Ushersyndroom: “Usher Syndrome will be treatable by 2025!”.
  • A patient brochure is in the works and will be released in early 2022. It will be available online and offline.
  • In 2022 we will start with the first webinar. This is accessible to everyone who is committed to the mission of the Stichting Ushersyndroom. A new webinar with a different speaker every quarter.
  • Of course we also want to send out a new call: Rocket Fuel Grant. And the desire to be able to subsidize even more research projects that can lead to a solution for all people with Usher syndrome.

We are well on our way to the dot on the horizon! However, a lot of money is still needed. Can we count on your support again in the coming years?

Do you have any questions or do you want to support the foundation? Send an email to info@ushersyndroom.nl

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