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.
Senior Software Engineer, Technical Director, Award-winning Simulation Supervisor at Pixar Animation Studios, Cure GM1 Foundation Founder and CEO, Award-winning Rare Disease Patient Advocate
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
