Gene People’s Post

Friedreich's Ataxia (FA) is a rare genetic disorder, known as FA, affects movement due to a mutation in the frataxin gene. As a result, individuals with FA experience muscle weakness, loss of coordination, and difficulties with balance and speech. Simple tasks like walking and speaking become challenging hurdles for those living with FA. Despite these obstacles, they face each day with remarkable resilience. Want to help people with FA? join us this May for Lend Us Some Muscle! Whether it's joining a charity run, hosting a fundraiser, or spreading awareness online, every action counts in the fight against FA. lendussomemuscle.com #FriedreichsAtaxia #LendUsSomeMuscle

Compassion is the ultimate leadership skill.

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

FP&C has close connections who have been greatly affected by ALS. Odds are, you too know someone affected by this devastating disease. If you have the ability to give this month, please donate at the link in the comments! FP&C is matching up to $2500 for the ALS Therapy Development Institute, an incredible organization that is not only working on finding a cure, but also supports the families of those affected with genetic testing as well. Check out both the link in the comments and the link on the post for more information about ALS and how YOU can help us find a cure and support our affected loved ones! #ALS #ALSTDI #fpacconsulting #sdvosb #vosb

Until midday 5th December, one donation 👉 https://lnkd.in/e76aj8s4 = TWICE the impact as part of @BigGive #ChristmasChallenge Donations will help to fund #geneediting research. The ability to correct the genetic faults that lead to epidermolysis bullosa would mark a major breakthrough in progress toward permanently treating EB. #CureEB #ResearchtheCure #BigGive #EpidermolysisBullosa #GeneEditing #Research

Announcing our 2023 end-of-year goal - the race to $200k along the Race to a Cure for FOXg1 syndrome! Last year we flew past our $100,000 goal! 🎉 Let's double it for our 2023 end-of-year campaign! We can do this! 🔗 https://lnkd.in/dbQJwGfx Join the FOXG1 community, including parents, families, and supporters, in our quest to bring us one step closer to a cure for FOXG1 syndrome. Take the lead by forming a team and actively participating in the race to raise $200,000 by December 31, 2023! Check out our robust Fundraising Toolkit to help your teams meet your goals! 🔗 https://lnkd.in/dajKS5Mz Achieving this milestone will propel us towards clinical trials. Currently, we have two promising programs in progress—a gene therapy and an ASO program. Together, let's accelerate the pace to ensure these programs reach clinical trials! On your marks, get set… RAISE! 💨 #racetoacure #foxg1 #foxg1syndrome #raredisease #foxg1awareness

If you have been thinking about donating to a charitable organization during this giving season, please consider Ferre Genetics. I can't say enough about how much they do to help families in upstate NY and PA to receive needed genetic counseling and testing services. Consider donating today. Any amount is helpful! Be a #changemaker!! #Genetics #GeneticCounseling

🌟 Reflecting on a Decade of Impact: The ALS Ice Bucket Challenge 🌟 National Geographic's article from June 21st, 2023, takes us back to the summer of 2014, highlighting the Ice Bucket Challenge's monumental success. With 17 million participants, the challenge raised $115 million in just six weeks, funding critical ALS research across the globe. Thanks to this global movement, we have seen new gene discoveries, more treatment options, and improved care for ALS patients. The path to finding a cure has never been clearer, with researchers optimistic about making ALS a livable and eventually curable disease. 🧬🔬 We are incredibly proud of how far we have come, inspired by initiatives like the Ice Bucket Challenge. As we approach the 10th Anniversary of this viral sensation, we invite you to join us again. Let's continue to make waves, support each other, and move closer to a world without ALS. 🙌 Dunk. Challenge. Donate. #ALSCommunity #IceBucketChallenge #DunkChallengeDonate #ALSResearch #TogetherStrong #10YearsLater #MakeASplash

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

Join CureGRIN in our annual Count Me In fundraiser and make your donation go twice as far with a dollar-for-dollar match up to $20,000! https://lnkd.in/g4bcjby5 Why is fundraising so critical? 2023 is turning out to be a pivotal year in efforts to treat / cure kids with neurodevelopmental disorders. Clinical trials for genetic medicines are already underway for similar diseases and we need to make sure GRI Disorders are next in line. In order to make this happen we need funds to make our community "clinical-trial-ready." This includes: -Conducting the first GRI Census to get the broadest snapshot of the number, variants and symptoms of GRI patients around the world. -Building cell and animal models for different genes and variants. -Creating a series of “curemaps” outlining a menu of pharmacological and genetic options to treat or cure each gene. -Funding research to answer the “10 Essential Questions” in our Research Roadmap. -Ensuring we are unignorable to companies developing treatments and cures