Radosław Chełchowski’s Post

This week is #CFWeek! A week to help raise awareness and vital funds for a life limiting condition. We're avid supporters of Cystic Fibrosis Trust and the work they do. PLEASE JOIN US IN WEARING YELLOW THIS FRIDAY 21ST JUNE TO HELP RAISE AWARENESS. Cystic fibrosis (CF) is a genetic condition affecting more than 10,900 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing. People with cystic fibrosis (CF) often look healthy, but it's a life-limiting condition that affects those living with it in many ways. The condition is caused by a genetic mutation that means cells in the human body are unable to move salt and water around effectively. This results in a build-up of thick mucus in the lungs and digestive system, as well as a number of other effects. This year we're aiming to raise £10,000 for this incredible charity. If you can donate anything at all, please do via this link: https://lnkd.in/eJMpufm5 Find out more about why we're so passionate about supporting this charity - https://lnkd.in/e7MM46cA #CFAwareness #CysticFibrosis #CFTrust

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

Please help wish a beautiful sweet and rare young lady a wonderful sweet 16! Double your donation up to $16K through Rare Disease Day, 2/29! curegm1.org/donate (option for no fees with PayPal Giving Fund) or https://lnkd.in/gX6658UM Your help is critically important to all those dying due to GM1 gangliosidosis. You can help make a difference. 10+ years ago, Iris was just about to start kindergarten when our world was completely changed forever and shaken by a fatal diagnosis of GM1 gangliosidosis. Doctors who were uninformed about juvenile GM1 told us that she had over 5-10 years left to live and she's still here, still fighting for every single day and moment. We founded the Cure GM1 Foundation in her honor and in honor of all those suffering from GM1 gangliosidosis. Significant strides have been made. There have been 4 clinical trials since 2019 and there were no trials prior to the creation of Cure GM1. Tragically, only one trial is still running, the remaining trial is in Phase 3, the final stage. To make matters worse, rare disease programs have been shuttered due to a downturn in biotech and gene therapy. We try to remain hopeful, but the reality is that this fight continues and more help is needed. Children and babies are dying while programs are shelved. The science is known on how to help and yet programs are stopped due to money. There are still many ways that we can contribute to help, including next generation therapies, newborn screening, continued advocacy, and more. Thank you. Please kindly share and spread the word. #curegm1 #raredisease #advocacy #birthdays #donate #give #hope #fightforlife #smallactionsbigimpact Music by BenSound

Today is World Thalassemia Day, a significant occasion to raise awareness about this genetic blood disorder characterized by abnormal hemoglobin production. Let's support individuals living with thalassemia and emphasize the critical need for regular blood donations to aid in their treatment. Your donation can make a life-changing difference. #WorldThalassemiaDay #BloodDonation #SupportThalassemia #DigiTrendshealthcare #DigiTrends

Please wish my beautiful sweet Iris and rare young lady a wonderful 16th birthday! Double your donation up to $16K through Rare Disease Day, 2/29! curegm1.org/donate (option for no fees with PayPal Giving Fund) or https://lnkd.in/gktBZ5Vb Your help is critically important to all those dying due to GM1 gangliosidosis. You can help make a difference. 10+ years ago, Iris was just about to start kindergarten when our world was completely changed forever and shaken by a fatal diagnosis of GM1 gangliosidosis. Doctors who were uninformed about juvenile GM1 told us that she had over 5-10 years left to live and she's still here, still fighting for every single day and moment. We founded the Cure GM1 Foundation in her honor and in honor of all those suffering from GM1 gangliosidosis. Significant strides have been made. There have been 4 clinical trials since 2019 and there were no trials prior to the creation of Cure GM1. Tragically, only one trial is still running, the remaining trial is in Phase 3, the final stage. To make matters worse, rare disease programs have been shuttered due to a downturn in biotech and gene therapy. We try to remain hopeful, but the reality is that this fight continues and more help is needed. Children and babies are dying while programs are shelved. The science is known on how to help and yet programs are stopped due to money. There are still many ways that we can contribute to help, including next generation therapies, newborn screening, continued advocacy, and more. Thank you. Please kindly share and spread the word. Music by BenSound. #curegm1 #raredisease #advocacy #birthdays #donate #give #hope #fightforlife #smallactionsbigimpact

Absolutely, having healthy children is a blessing, and for those facing challenges due to conditions like GM1 gangliosidosis, support from individuals and organizations can make a significant difference. GM1 gangliosidosis is a rare genetic disorder that affects the nervous system and typically manifests in infancy or early childhood. The Cure GM1 Foundation is dedicated to funding research, raising awareness, and supporting families affected by GM1 gangliosidosis. Their efforts contribute to advancing scientific understanding of the condition and developing potential treatments or cures. Supporting organizations like the Cure GM1 Foundation can be done in several ways: Donations: Contributing financially to the foundation enables them to fund research projects, provide support services to families, and raise awareness about GM1 gangliosidosis. Volunteering: Offering your time and skills to help organize events, raise awareness, or assist with administrative tasks can be invaluable to organizations like the Cure GM1 Foundation. Advocacy: Advocating for increased research funding, promoting awareness about GM1 gangliosidosis, and supporting policies that benefit individuals and families affected by rare diseases can make a meaningful impact. Fundraising: Organizing fundraising events or campaigns within your community or workplace to support the Cure GM1 Foundation can help raise vital funds for their initiatives. Spreading Awareness: Sharing information about GM1 gangliosidosis and the work of the Cure GM1 Foundation through social media, community events, or educational seminars can help raise awareness and support for their cause. Every contribution, no matter how small, can make a difference in the lives of those affected by GM1 gangliosidosis and their families. If you're able to find it in your heart to support the Cure GM1 Foundation, you'll be helping to make a positive impact on the lives of individuals facing this rare genetic disorders. Click on Doug's post below to see the journey of Iris his daughter who has GM1 gangliosidosis. I have known Doug for 12 of the 16 years of his daughters Iris's life.

Please wish beautiful sweet Iris and rare young lady a wonderful 16th birthday and help us spread awareness for Rare Disease Day! Double your donation up to $16K through Rare Disease Day, 2/29! curegm1.org/donate (option for no fees with PayPal Giving Fund) or https://lnkd.in/gktBZ5Vb Your help is critically important to all those dying due to GM1 gangliosidosis. You can help make a difference. Watch on YouTube: https://lnkd.in/gzYXfVij 10+ years ago, Iris was just about to start kindergarten when our world was completely changed forever and shaken by a fatal diagnosis of GM1 gangliosidosis. Doctors who were uninformed about juvenile GM1 told us that she had over 5-10 years left to live and she's still here, still fighting for every single day and moment. We founded the Cure GM1 Foundation in her honor and in honor of all those suffering from GM1 gangliosidosis. Significant strides have been made. There have been 4 clinical trials since 2019 and there were no trials prior to the creation of Cure GM1. Tragically, only one trial is still running, the remaining trial is in Phase 3, the final stage. To make matters worse, rare disease programs have been shuttered due to a downturn in biotech and gene therapy. We try to remain hopeful, but the reality is that this fight continues and more help is needed. Children and babies are dying while programs are shelved. The science is known on how to help and yet programs are stopped due to money. There are still many ways that we can contribute to help, including next generation therapies, newborn screening, continued advocacy, and more. Thank you. Please kindly share and spread the word. Music by BenSound. #curegm1 #raredisease #advocacy #birthdays #donate #give #hope #fightforlife #smallactionsbigimpact

Early detection of ovarian cancer dramatically increases survival rates. Learn how you can make a difference and view more information on prevention, symptoms, and support. Consider donating to support vital research: https://lnkd.in/eqEgGWzg #OvarianCancerAwareness

Hi all, today is wear yellow day! This is my 2 year old daughter Isla. Isla has a lung condition called Cystic Fibrosis, she requires alot of hospital, specialist care and treatments. What is cystic fibrosis? in short Cystic fibrosis (CF) is a genetic condition affecting more than 10,900 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing. People have CF because they have inherited a faulty gene from both of their parents. The gene affected by CF controls the movement of salt and water in and out of cells. People with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body. If the Cystic Fibrosis Trust (CFT) has its way, the United Kingdom will be awash in yellow on June 21. On that day, the nonprofit organization is asking patients and supporters to don yellow to symbolize a brighter future for those with the progressive inherited lung disease. The annual Wear Yellow Day is held during Cystic Fibrosis Week in the U.K., where 1000's people live with cystic fibrosis (CF). If you would like to donate to this amazing non-profit charity and help amazing people like Isla please visit https://lnkd.in/dh3mcu4E #wearyellowday #CFYelfie #cysticfibrosis #cysticfibrosistrust

LAST CHANCE to double your gift! Double your donation up to $16K through Rare Disease Day, 2/29! curegm1.org/donate (option for no fees with PayPal Giving Fund) or https://lnkd.in/gX6658UM Your help is critically important to all those dying due to GM1 gangliosidosis. You can help make a difference. 10+ years ago, Iris was just about to start kindergarten when our world was completely changed forever and shaken by a fatal diagnosis of GM1 gangliosidosis. Doctors who were uninformed about juvenile GM1 told us that she had over 5-10 years left to live and she's still here, still fighting for every single day and moment. We founded the Cure GM1 Foundation in her honor and in honor of all those suffering from GM1 gangliosidosis. Significant strides have been made. There have been 4 clinical trials since 2019 and there were no trials prior to the creation of Cure GM1. Tragically, only one trial is still running, the remaining trial is in Phase 3, the final stage. To make matters worse, rare disease programs have been shuttered due to a downturn in biotech and gene therapy. We try to remain hopeful, but the reality is that this fight continues and more help is needed. Children and babies are dying while programs are shelved. The science is known on how to help and yet programs are stopped due to money. There are still many ways that we can contribute to help, including next generation therapies, newborn screening, continued advocacy, and more. Thank you. Please kindly share and spread the word. #curegm1 #raredisease #advocacy #birthdays #donate #give #hope #fightforlife #smallactionsbigimpact