Happy 3rd Birthday to Porter Heatherly!
A very special thank you to the Heatherly family for their amazing efforts in honor of Porter’s 3rd Birthday! The Heatherly family was told that Porter might not live to see his 2nd birthday, let alone his 3rd. To celebrate Porter’s birthday, his parents organized an amazing fundraiser. $25,447 will be allocated towards GM1 medical research in honor of Porter! Thank you from the bottom of our hearts to all who contributed!
Click here on the link to the TV and news coverage of Porter’s event!
Christine Waggoner, the President of the Cure GM1 Foundation also had a chance to visit with Dr. Doug Martin and his entire team of researchers in Auburn, Alabama before attending Porter’s birthday party. There are many dedicated individuals hard at work at Auburn and UMass. We are so grateful for their work towards to a cure for GM1!
Their collaboration with Lysogene is going well. We were told that the work is still on track towards a 2017 gene therapy clinical trial. Other projects are also in progress including intravenous gene therapy research. The intravenous project aims to treat the entire body using gene therapy as opposed to just the brain. Your funding impacts these projects and moves research forward!
Ruby Webster in Memoriam
Every time a child succumbs to this horrible condition, we are absolutely heartbroken. Beautiful Ruby was just 51 months old when she earned her wings on September 12th, 2015 at 6:30am. Her story truly touched so many people’s hearts. We extend our deepest condolences to her family during this very difficult time.
Fight GM1 and Join us for our November Fundraiser!
We are very pleased to announce an incredible fundraising event in partnership with Global Genes, the Grace Wilsey Foundation and the KCNQ2 Cure Foundation. Our foundation and all these rare disease foundations are based here in California. We are joining forces for this exclusive pre-release screening to combat rare disease and to fight for cures!
Be on the lookout for more information and the official invitation! For now, please save the date and consider joining us! If you would like to volunteer for the event, please contact us.
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