The photo above shows one of the strongest families I know on this earth. I was honored when Christine Waggoner, who’s a good friend of mine from high school asked me to photograph her and her amazing family this past year. Christine and I reconnected over social media about 9 years ago and shortly after I learned of her daughter, Iris’s rare and fatal brain disease called GM1 Gangliosidosis. Immediately, I asked her what I could do.
The first thing she asked for help on was to get the word out. I helped find some wonderful celebrities who took a few minutes to bring a light to it by performing a tongue twister on the name of the disease. Here’s one you might recognize: https://www.youtube.com/shorts/UlXdxbPBP5Q and here’s Christine talking about it as well: https://www.youtube.com/watch?v=x28YnCQUkpg.
Christine began the non-profit organizations, SweetIris.org and Cure GM1.org in an effort to find a cure for this rare brain disease. It’s found in infants and children worldwide. And, it’s fatal. Currently, there is no cure, however they are making considerable efforts to support the families around the world whose children are also affected by it in giving them support and information on it as well as keeping them updated on any studies or progress in finding a cure.
Rare diseases are just that… Rare. So, it’s incredibly difficult to get the necessary backing from governments to assist in finding a cure for them simply because they don’t have enough people suffering from them to do something about it. So, people like Christine and Doug have to work especially hard to fundraise and pave the way in this case to make any progress in finding a cure for their beautiful and sweet daughter. It’s not fair and they cannot do this alone!
I thought I would take a moment to do something I could to help by sharing this with you. If you have the means, please consider donating to this worthy cause: https://www.curegm1.org. Every little bit helps!! And, if not- feel free to share this on your socials! Please help get the word out so we can kick this horrible word/ disease away and find these families a cure!
I cannot imagine what it would be like to discover any of my children had to suffer from this horrible disease and wish that no child would ever have to face this disease again. Help be a warrior against GM1 Gangliosidosis! https://www.curegm1.org
I attended the annual conference this past year in California and here are some of the highlights: