Mike and MJ running in 2022
Dear Friends and Family,
It’s marathon time again! In preparation to write this letter, I read the letter from last year and the year before that. I have to say, they are not an easy read. Being reflective on our life can be difficult. We really do try to live for today and to hold the ones we love close. But you know, we just don’t know what the future holds and as much as we try to ignore it, reading the letters just seems to bring it to the forefront.
I wish you could all experience the moment when we are about to start the marathon. It’s hard to express the emotions when we stand in the crowded corral, surrounded by strangers who will all follow that same path. Everyone there for different reasons…for some just challenging themselves, others checking off a bucket list item, some run for a charity, and some to support a friend. We all stand in the dark, chilly early morning in roped off sections quietly stretching and making last minute adjustments just waiting for the National Anthem and the fireworks indicating the start. It’s then I get in my head, looking down at Michael in the jogger. I don’t want to let him down…be it in the next 13.1 miles or the days, weeks, and years to come. I know he’s an adult but it’s different. I’m still his protector, I’m supposed to make things better. Well, as we know too well, Duchenne had different plans. Running the marathons and especially now with Michael, pushing myself to limits (especially as the joints get older) makes me feel like I’m doing something to make things better. So here we are….17 years of running marathons!
So yes, I have a few selfish reasons to run with my buddy but most importantly, we run because we need to fundraise for PPMD…we need to keep moving the needle closer to a cure!
This year after 5 ½ years of being in the exon skipping trial, the drug was approved by the FDA! It’s called Amondys. Michael continues to receive weekly infusions through his port. The primary insurance and Medicaid both denied him access to the drug, but we are happy to report after the 3rd appeal (external), we have an approval! Once the drug was approved, he was eligible to participate in another trial. Unfortunately, Michael has had some declines which made him ineligible for most enrolling trials, but we did find a trial for heart fibrosis. He started in September and we don’t know if he is getting the drug or a placebo but next September if the drug is safe and effective, he will definitely get the drug.
Duchenne takes so much from so many, but we are not giving in. Suzanne and I will continue to fight, to run, to advocate, to do what needs to be done to be the protectors of our son. And Michael has no small part in this as his positivity, unending strength and bravery inspire us daily.
We ask for your support of our marathon run. Your support will hopefully change the course of Duchenne for Michael and others. We are making progress…we are…it’s slow…but your support through the years is making such a difference.
With love and gratitude,
Mike and Suzanne Gaglianone
If you would like to donate, please click "donate" or if you prefer send a check made out to PPMD and mail to our address: 205 Lowell Ave. Mt. Ephraim, NJ 08059
All funds raised will benefit Parent Project Muscular Dystrophy (http://join.parentprojectmd.org) and go directly toward researching a cure. Your contribution is 100% tax deductible.