The Blog

We can’t believe it – We’re OVER HALFWAY there!! After only two weeks we’ve made such great progress, giving us all so much HOPE that we will be able to develop this proof of concept for the ASO Therapy!  So far, we’ve raised €44,108 – bringing us that much closer to reaching our €75,000 goal – Thanks to ALL OF YOU!  We have about A MONTH LEFT to raise a little more than €30,000  – we believe that we can do

It’s already been a week since the launch of our Campaign, and we can’t believe the amazing start we’ve had! 🎉Thank you to all of you who have donated, shared, and been involved in the campaign thus far – we are beyond grateful for you and what you’ve helped us to accomplish! We have successfully received €34,438 and truly this wouldn’t have been possible without all of you! 💙What does this mean?Well, this amount allows

We’re happy to announce that our GoFundMe Campaign is officially LIVE! 🥳 Please find it here: https://gofund.me/a0081c7c ! It has been a long journey to get here, but we’re excited to start fundraising for one of the two treatment paths we’ve identified for MCOPS12 Patients. The first path is ongoing and focuses on testing drugs in disease models to improve the two major symptoms of MCOPS12 patients – their severe and progressive movement disorders and

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”.