Thank You, PPMD

This time last year, three months after learning of my adorable grandson’s Duchenne diagnosis, his father and I went to Orlando and attended the annual conference of Parents Project Muscular Dystrophy. President Pat Furlong leads the non-profit and does a wonderful job.

We quickly learned that PPMD is all about real time and transparent information exchange. Collective knowledge along with world class genetic research will defeat Duchenne, sooner or later.

For four days, we listened to rare disease medical researchers, pharmaceutical reps, many parents, counselors, and PPMD leadership and quickly compiled a holistic understanding of Duchenne and its impact. In addition, we saw some very delightful young guys, mostly non-ambulatory, hanging together, listening intently to information flowing from the stage, and warmly sharing their personal experiences with anyone who would listen. For such a tragedy to have befallen us, getting onboard with PPMD in such an in-depth manner so soon after the diagnosis was a valuable kick-starter for father and grandfather. We instantly became committed advocates to end Duchenne.

Then, last week, due to COVID-19, we had to attend this year’s PPMD conference virtually. Pat Furlong again showed why she is such an efficacious leader. The technology worked for the most part. The panelists were exceedingly informative. The moderators kept the action going with terrific questions posited to speakers and panelists. And, God bless her, Pat promoted a calm spirit over the proceedings.

But, you know what? There is nothing like being there. Looking into the eyes of the Duchenne boys in wheelchairs, listening to the cracking voices of parents, measuring the authenticity of the presentations of pharmaceutical reps then following up with them at after hours settings, being able to immediately caucus with my son-in-law after each session. The virtual event was very informative but only the perspective of being up front and personal is truly revealing. 

To end Duchenne, we need more revealing. I reach out to our Duchenne community and ask that we continue Pat Furlong’s authentic approach to sharing late breaking news at her conferences and constantly highlight such late breaking news on a daily, weekly and monthly basis among those lawmakers, medical providers, research scientists, insurance companies, pharmaceutical companies, health policy makers and Duchenne families who wish to continue fighting the good fight.

Thank you, PPMD.

Sincerely,

Papa in Tennessee