Hi everyone! I have finally heard back from Dr. Strauss and the researchers regarding the funding needed for the gene therapy research. (They will be acquiring a mouse with the disorder for their research.) They have proposed to me that it would take two years of research and a budget of $266,000 before they can present their findings from the mouse for FDA trial. I think this number is a very reasonable goal to try to aim for. With permission being granted from the researchers, I will begin to start planning some fundraisers. I do need to work out some logistical details before getting started but will let you know when I get everything I need to officially start.
I would like to do a few different types of fundraising, an online fundraiser being one of them so that all of you can be a part of it if you would like. I was hoping I could get permission to use some photos of your GM3 children which could be of just them or could be of your entire family. I feel like people who will be donating need to see the faces of those who they will be helping so they can form a more personal connection to the cause. If you are willing, can you please post a few photos on this post with the first name, age of child and something he/she likes. For example: Gavin, age 3, loves to watch cartoons and roll around on the floor. Something to make them more emotionally connected to what they will be donating to. Thank you!! I can’t wait to get all of this started! Together, we can make a difference! 💞