The Blog

We are thrilled to celebrate the incredible generosity of our 97 champions for a cure who, in just a few short days, have brought us just over $11K! Your support is a beacon of hope for MCOPS12 kids, but our journey is far from over. The Progress So Far: In the spirit of gratitude, we want to extend our heartfelt thanks to those who have become true champions for a cure. Your donations have propelled

We’re excited to kick off our end-of-year campaign in collaboration with A Cure for Sophia and Friends on Classy, and we need YOU to be a part of this impactful journey! Today, we’re not just fundraising; we’re rallying for change, aiming to fund a second drug repurposing study addressing the movement disorders faced by #MCOPS12 patients. Our Goal: $100,000 USD – Paving the Way for Life-Changing Treatment! Imagine the power in your hands to directly

As the holiday season fast approaches, it’s easy to get caught up in all the hustle and bustle of holiday shopping and doorbuster deals, taking us away from the spirit of coming together and giving back. That’s exactly why #givingtuesday was created. As a day, to focus back on the spirit of giving and helping others. Here at Cure MCOPS12, Giving Tuesday is more than just a day – it’s a celebration of compassion and

🙌 Exciting News! Partnering with A Cure for Sophia and Friends, we invite you to be part of our end of year fundraising campaign launching on November 28th, on #givingtuesday2023. Together, we aim to fundraise for a pivotal drug repurposing study that holds the potential to transform the lives of #MCOPS12 patients by potentially addressing the movement disorders like hypotonia, spasticity/dystonia experienced by MCOPS12 patients.  The Study: Unlocking the Potential Our goal is to raise

🙌Last week, the Austrian Platform for Personalized Medicine (ÖPPM – Österreichische Plattform für Personalisierte Medizin) held their annual conference, with a focal point of #RareDiseases. Our founder, Reinhard Pell, had the opportunity to present recent progress on our MCOPS12 research, specifically highlighting our ongoing work on a personalized drug development approach using Antisense Oligonucleotides to treat #MCOPS12. Personalized medicine, or precision medicine, harnesses your unique genetic makeup to tailor decisions regarding disease prevention, diagnosis, and

In a world that often celebrates the ordinary, it’s the extraordinary stories that remind us of the incredible strength and resilience of the human spirit. Today, we’d like to share the inspiring journey of Zayd, a member of our MCOPS12 community, whose story showcases determination prevailing over adversity. Zayd’s tale not only demonstrates his courage but also underscores the strength of rare disease communities coming together to provide support. Zayd’s Inspiring Journey Zayd’s story begins

📢Introducing Biswadip Sinha, a dedicated volunteer at Cure MCOPS12 who also works as a Lead of Pharmaceutical Development for Generic Inhalation Products! 🔬 Background and Expertise: Biswadip is a Pharmacist by education and has studied in both India and Germany. He holds a PhD in Pharmaceutical Technology and boasts a wealth of experience in drug product development of various dosage forms, both for new molecules and generic molecules. For the past 13 years, Biswadip has

Today is a special moment – it is exactly three years since our non-profit was founded! It’s time to celebrate but also to reflect on what we have achieved in the past three 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 focus on three pillars

The sun is shining, and summer is in full swing! As parents, we’re all on the hunt for ways to keep our children entertained and engaged during this vibrant season. But for those of us with children facing unique challenges due to rare diseases, finding the perfect toys can be quite a task. At Cure MCOPS12, we are dedicated to supporting children with #MCOPS12, a condition marked by microphthalmia, vision impairments, mobility issues, and variable

We are thrilled to share about our recent visit to Montreal, where we had a face-to-face meeting with Prof. Jacques Michaud and Valerie Chu to discuss the progress of the MCOPS12 patient natural history study! The natural history study, spearheaded by Valerie Chu and supervised by Prof. Michaud, has been a pivotal undertaking for understanding the progression and characteristics of MCOPS12. This study, made possible by your unwavering support and contributions, is laying the foundation