As I write this letter, I feel my breath catch thinking about our journey with Duchenne. Everyone’s Duchenne story is different, and ours has certainly been unique. As a toddler, my son Tommy was hospitalized because of an unrelated virus, and after a series of tests, we went home with a diagnosis of Duchenne. This was shocking news for our family, to say the least.
Tommy is in middle school now, and his progression has been consistently ‘slower’ than expected. We are grateful that he is still fully ambulatory, growing, and doing well. However, we worry about what the future holds. We’ve made so much progress in Duchenne research and care, but there are still unknowns. Is my son an outlier? Or, is there a pattern to be found in his data that will explain his progression and differentiate it from that of others?
Your gift today will bring us closer to answering some of these essential questions about Duchenne.
Knowing that our community needs data to accelerate clear answers, our family has participated in Natural History studies, as well as the Cardio-Pulmonary study with ImagingDMD. We are proud to have done our part as citizen scientists, and will continue to do all we can to push Duchenne research forward.
I truly feel that unlocking the secrets of my son’s data will unleash the breakthroughs of tomorrow.
Pat Furlong and PPMD have been sources of strength and trusted resources for us since Tommy’s diagnosis. I have never been let down and in fact, PPMD and this community continually lift me up. Knowing that PPMD brings together the community and invests in research is what matters.
I wholeheartedly believe that the Biomarkers Initiative and the Protein Mapping Project will make a difference in the development of therapies and the future of Duchenne research.
Knowing that my gift will be doubled because PPMD brought together this group of community partners further illustrates their visionary strategy as a convener and a leader in this fight.
Thank you for welcoming me to your community so many years ago; your support never goes without recognition. As a PPMD’s Connect Coordinator, I have made it my mission to pay it forward to those families just beginning their journey with Duchenne. I hope that with this project, and your support, we will unlock the information needed to help predict what their Duchenne story will be.
Warmly,
Susan Parzymieso
PPMD’s Connect Coordinator and Parent