FOXG1 Research Foundation’s Post

Cockayne syndrome – type B (CSB) is a profoundly devastating and deadly genetic disorder that is tragically destroying the lives of children, stripping away the promise of their futures. Currently there is no cure or treatment for this rare disease and the only hope for children is development of gene therapy. In Viljem Julijan Association we are on a courageous mission to develop gene therapy for Cockayne syndrome – type B (CSB) and we have partnered with scientists from USA and Portugal who are dedicated to the creation of this vital treatment and are actively pursuing it. Our mission was inspired and initiated by a brave 5-years old girl named Karolina from Slovenia (Europe), who became the beacon of hope for all children with CSB around the world. To bring this vision into reality, the development of gene therapy necessitates substantial funding, amounting to €2,000,000 and in Viljem Julijan Association we have already raised €1,310,000 through the generosity of our supporters. Yet, the path ahead requires further financial assistance to continue this critical research and development. Please help us support the research and development of gene therapy for Cockayne syndrome – type B and contribute a donation. Contributions can be made through PayPal or the GoGetFunding platform (https://lnkd.in/dCH3PVax). By contributing a donation, you are not just offering financial aid; you are investing in hope, in life, and in the future of children affected by Cockayne syndrome – type B. Your generosity could be the key to unlocking a new horizon for many, offering them a chance at a brighter tomorrow. Dr Clévio Nóbrega Dr Christina Pacak #ViljemJulijanAssociation #GeneTherapy #CureForCSB #Treatment #Cockaynesyndrome #Karolina #Slovenia

A genetic health risk could mean you have a change in your DNA that makes you more likely to develop certain types of cancer, heart disease, neurological disorders, and other common health risks. Genetic testing to identify these risks is life-saving because knowing early can lead to earlier or more frequent screenings. It can even let you know if certain family members may also be at risk of developing these conditions. When you make a donation to HudsonAlpha's Annual Fund, you're supporting programs like the Smith Family Clinic for Genomic Medicine, that offer genetic testing services to help access this important health information. Make a donation by July 31 and your gift will be matched up to $10,000 by Freedom Real Estate and Capital: https://lnkd.in/gQugiifP #genetics #health #risk #annualfund

This organization is very important to me. If your company has an interest in donating it can be done at the link below.

It's been 17 years since I was diagnosed with cancer. In those years, I've had a consistent drip of texts or phone calls: "Heat, this person in my life just got diagnosed with cancer. What should I say?" "How Not to Say Dumb Shit to Someone Dealing with Cancer" gives you scripts of what to say (and examples of things to skip), as well as a bunch of ways you could be helpful (pick one—don't try to take on the whole list) in an easy-to-use card deck format. It's available right now on Kickstarter. Grab one for yourself, five for your network, fifty for your office. And tell a friend. https://lnkd.in/g9fHTWqm

May is NF Awareness month, 22nd May is NF2 Awareness Day. Why the 22nd? The NF2 gene is located on chromosome 22 (NF2-SWN) Throughout the month of May, we would like to raise awareness of NF2 and funds to advance our resesrch, gene therapy & immunotherapy for NF2. How can you help? We have an exciting 2.2 or 22 challenge in which anyone can take part. Get your family, friends, work colleagues, neighbours or anyone else involved to help you and start a fundraising campaign of your own! This is YOUR DAY YOUR WAY, get activ, and get on social media! What does the challenge involve? Well its about doing something related to the 22 or 2.2 numbers!, so get your thinking caps on and think how you can get involved, we will be posting some ideas over the next few days to give you some inspiration! And, of course, we want to know what you are doing and we want pictures, so we can share those and your fundraising link. #nf2warrior #achievemoretogether #endNF2 #NF2awareness #neurofibromatosistype2 #NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #nf2charity #nf2gene #nf2chromosome22 #nf2trials #nf2research #nf2ismyteam #nf2awarenessday #charity #fundraising #22challenge #2.2challenge

the survey to understand how genomic testing is being applied in clinical practice across canada is open and we are asking all medical oncologists and pathologist treating or evaluating tumours to fill out the survey. for every survey completed a 20$ donation will be made to the Terry Fox Foundation but if that wasn't reason enough here are 4 more reasons to fill out the survey the survey is available here in English https://lnkd.in/eZQ5T-sw ou en français ici https://lnkd.in/eVP_ReW4 #genomictesting #molecularprofiling #biomarkers

Did you know that a rare disease is defined as one that affects fewer than 200,000 people? Today, on Rare Disease Day, as we do every day, we spotlight NF2, a condition that impacts a small but resilient community of individuals worldwide. NF2 may be rare, but its impact is profound. It's a genetic disorder characterized by the growth of tumors on the nervous system, leading to hearing loss, balance issues, and sometimes even paralysis. Living with NF2 means facing daily challenges that most people can't imagine. But here's the thing: even though NF2 is rare, our hope for a cure is anything but. With your support, we're pushing forward the research in gene therapy at Nationwide Children's Hospital's Meyer Lab. Our mission is to change the lives of those battling NF2, one step closer to clinical trials and, ultimately, a cure. Join us in raising awareness and funds for NF2 research. Every donation, no matter how small, brings us closer to our goal. Let's show the world the power of unity and compassion in the face of rare diseases. Together, we can make a difference! Donate here: https://buff.ly/4c35L9w #RareDiseaseDay #NF2 #NF2Awareness #NeverForget2LivewithHope

TeacherActive are raising money and awareness for the Cystic Fibrosis Trust. Cystic fibrosis (CF) is a chronic and progressive genetic disorder that primarily affects the respiratory and digestive systems. This condition results from mutations in the CFTR (cystic fibrosis transmembrane conductance regulator) gene, leading to the production of thick and sticky mucus. This mucus can clog airways and ducts, causing various complications and affecting the overall health of individuals with CF. 🍋 Donate Today: Your financial support will directly contribute to ongoing research initiatives, medical advancements, and support programs for individuals and families affected by cystic fibrosis. 🌻Spread the Word: Share this post with your friends, family, and social networks. Awareness is a powerful tool, and together, we can reach more people, garnering increased support for this important cause. 💛 Donate Now and Be a Beacon of Hope! https://lnkd.in/ekv5iv_t Your generosity will not only fund critical research but also provide hope and support to those who need it most. Let's stand together, united in our mission to breathe hope into the lives of individuals with cystic fibrosis. #pridepassionpeople #TeacherActive #cysticfibrosis

NF2 patients navigate a complex path, confronting hearing loss, balance issues, and tumors that impact their nervous system. It's not just a medical condition; it's a daily battle that requires unwavering strength. Constant monitoring through diagnostic examinations, particularly MRIs, is a crucial lifeline for individuals with NF2. These tests are crucial in identifying any changes, devising treatment plans, and ensuring optimal patient care. 🌈 Why Your Support Matters: This Giving Tuesday, we're rallying together to raise funds for NF2 research, focusing on a crucial Toxicology Study that will help bring us one step closer to clinical trials. Your donations will directly impact the lives of NF2 warriors, providing hope and helping to advance gene therapy. 🌟 Join the Giving Tuesday Campaign: Every dollar brings us closer to our $400,000 goal. Let's make a difference together! Donate now and participate in the movement to create a future free from NF2. DONATE HERE: https://buff.ly/3G1fIWb 🙌 Thank You for Your Support: Your generosity is more than a donation; it's a lifeline for those navigating the NF2 journey. Together, we're making strides towards a cure. 💙 Spread the Word: Share this post to raise awareness and create a ripple effect of change.

🎗️ Customer Spotlight: Building a Future for Young Cancer Survivors A cancer survivor herself, Stephanie Samolovitch founded Young Adult Survivors United (YASU) to address the unique challenges faced by young adults grappling with a cancer diagnosis. Providing crucial emotional, social, and financial support, YASU helps this community regain their footing. We recently had the opportunity to sit down with Stephanie and hear about the impact YASU has made over the last year alone, including: • 1,000 members nationwide—a major milestone • $15,000 raised for financial assistance grants—easing the massive financial burden of cancer treatments • $8,000 secured for a new legacy fund in just 2 months—ensuring future support for young adults • 100% of a fundraising goal achieved—every dollar fueling their mission With the help of Donorbox, YASU has been able to streamline its fundraising efforts by easily building & tracking campaigns, allowing them to focus more on delivering life-changing services. 📽️ Watch the full interview and see how Donorbox supports organizations like YASU in making a lasting impact: https://t.co/knrOd03YUo