The Blog

We’re excited to announce we will be launching a GoFundMe Campaign on the 29 November 2022! Our goal is to ultimately fund the creation of a therapy which uses Antisense Oligonucleotides (ASOs) – which are designed to target the “bad RNA” found in MCOPS12 patients. This therapy would enable us to directly combat the disease at the genetic level, which is critical in halting further progression and improving symptoms caused by this disease. This therapy

Drug repurposing (also called drug repositioning) is the process of investigating new therapeutic purposes for already existing drugs. The drugs of interest may either be commercially available or still in clinical trials – what they have in common is that their mechanism of action is understood, and their efficacy and (potential) side effects in humans are already known. Thus, compared to “conventional” drug development programs using novel drugs, drug repurposing is much faster and cheaper

Dear supporters of Cure MCOPS12, Time flies… I can’t believe it’s already been two years since our non-profit organization was founded! It’s time to celebrate and also reflect on what we have achieved in the past two years. It was a tough start with many uncertainties but high ambitions… Developing a therapy for a genetic neurological disease so rare that only little knowledge was available and not even a name existed. Our initial strategy was to

Please Welcome our Newest Fundraising Expert, Wittney Sadler! Wittney is a recent graduate from the University of Vienna with her Master’s in Human Rights, with a passion for making a difference and helping others! She has diverse experience in the areas of communications, philanthropy, and advocacy, which she has acquired through working with non-profit organizations, international organizations, and the government from all over the world! In her new role as Fundraising Expert, she will be

February 28th  2022 – Rare Disease Day. There are over 300 million people around the world living with a rare disease, 50% who are children. 72% of the 7000 diagnosed rare conditions are genetic diseases. Accurate diagnosis and opportunities for treatment remains an issue for many. Today we want to raise awareness for MCOPS12 which is an ultra-rare genetic neurological disease affecting only 50 children worldwide. Today is the day to show our strength as

Dear followers and supporters of Cure MCOPS12, We are happy to share some groundbreaking progress on understanding the mechanism of MCOPS12. Professor Taylor´s team from the University of Basel was able to generate induced pluripotent stem cells (iPSCs) from Simon´s blood cells and differentiate them into the specific type of neuron cells which cause MCOPS12. Having established such a disease model in the laboratory (in vitro), we are now able to study and hopefully to

A local newspaper supported CURE MCOPS 12 with an article in its weekly edition.  Many thanks to “Bezirksrundschau Oberösterreich”. 

We are happy to share another media release with you 🙂 This week, Simon´s story was published in the largest Austrian newspaper “Kronen Zeitung”. 

We are happy and also a little bit proud, that our initiative is attracting attention in the media landscape. Simon´s story was published in one of Austria´s major newspapers “Die Presse”. We hope that a lot of readers become aware of this rare disease and support our organization.