This summer, I attended the Cure GM 1 Gangliosidosis Conference to help document the day and do what I can to support my dear friend, Christine Waggoner who’s the co-founder of this amazing non-profit organization. Her beautiful daughter, Iris was diagnosed with GM1 when she was five years old and Christine went on a mission to do everything in her power to find a cure.
The organization is made up of families whose children suffer/ suffered from GM1 Gangliosidosis, which is a rare, pediatric brain disease that destroys babies’/ kids’ abilities to function. The parents and scientists are all incredible warriors against the rare disease and rally together every few years to support each other. The conference allows families to get updates from the scientists on what kind of advancements have been in finding a cure and what they can do to support their affected children and themselves regarding therapies and clinical trials in the meantime.
This is the third time I’ve photographed the conference and each time I’m so moved by their stories and also inspired by the work they’ve done to try and find a cure for it. The day is emotionally (and physically) exhausting but I’m always in awe of their incredible strength and perseverance as I can only imagine what they must go through on a daily basis.
Rare diseases struggle to get funding from the government for research because they’re rare, so it’s up to the individuals struggling with them to do their best to raise money in hopes of saving their loved ones’ lives.
For those of us parents who have healthy children, please remember how lucky we are that we don’t have to watch our child or children suffer with a horrible disease like this. A disease where there is no help or way to cure it.
If you would like to learn more about their efforts or donate to their cause, it would be amazing! Every little bit helps!
Here’s the info: https://www.curegm1.org.
They’re also kicking off another way to raise awareness and help raise donations by getting active through running, walking or biking with a program called DO IT FOR GM1! https://www.curegm1.org/do-it-for-gm1/
Here are some highlights of the conference and the faces of these incredible warriors.
