I am writing early this week to let you know why I will not be writing on Thursday. Got that? It’s kind of like in the movie Spaceballs when the dude asks “When will then be now?”
Answer: “Soon”
I have been invited to Columbus Ohio this week to participate in something called Grand Rounds at Nationwide Children’s Hospital. Nationwide is a leader in muscular dystrophy research, care, and has some of the most experienced and knowledgeable doctors in the country on staff.
Grand rounds are formal educational sessions in the medical field where healthcare professionals present and discuss patient cases, current research, or clinical advances with an audience of doctors, residents, medical students, and other allied health professionals. At least that’s what AI just told me.
In my case, I will be presenting for an hour as a patient living with a chronic rare disease. I am going to speak about the importance of learning about the person, not the diagnosis. I am also going to talk about how close I almost came to crossing into the next world on January 5, 2024.
During those hours and days I tapped into the most amazing network of professionals around the country as Vanessa texted and called in heart and lung experts in the world of treating adult muscular dystrophy patients. I am only alive because she did this and all of them got on the phone with the doctors at the ICU in Boston where I was.
Sounds amazing right? Well, it was but it shouldn’t have to come to that. There were also a bunch of doctors who needed to follow hospital “protocol” and, at times, ignored the advice of the muscular dystrophy experts on the phone. Believe me when I say that I didn’t really give a shit about protocol and who might sue who if someone made a mistake. I was fighting to stay alive and some of my doctors weren’t communicating effectively to the next shift, and the one after that and so on. Vanessa coordinated, pushed, pulled, and made sure everyone was talking with everyone. At one point she took large pieces of paper, wrote notes in marker and taped them to the window in my ICU room so that nursing staff would read them during times when she wasn’t there and I was unconscious.
Stuff like that should never happen. Period. I don’t care what rare condition you have: the family knows the care team doctors and where they are on the earth. The family likely knows more about treating and managing the disease more than the hospital staff who don’t see too many cases of (insert rare disease here) ever.
My story is not unique. The deeper I swim in the rare disease world and speak with families that have gone through similar emergencies (or worse) share details that are almost the same as mine. It’s always a hot mess.
But it doesn’t need to be. I learned a lot. I have organized some of my own sage advice and guidelines that I will share with the kind folks who are in the room on Thursday morning.
If you would like to hear and see me, you don’t need to travel to Ohio. If you are awake and functioning at 8AM EST, you can watch virtually. If you are an old student, yes I still make kick ass slides with a few jokes. If you are a loyal reader but I haven’t seen you in a while, come and see how white my hair is. If you are someone who is wondering if I still have the ability to educate, come and find out. This is my first go around doing Grand Rounds. I welcome all of the feedback that I can get. I plan on doing more of these in order to educate future doctors about how to treat the PERSON in addition to the rare disease.
Thursday morning I will aim to prove that this is one big reason why I am not dead yet. Get your ass out of bed, have some coffee and login. The entire shameless promotion is below. Thank you for coming to my future TED talk.
PLEASE JOIN US LIVE IN STECKER AUDITORIUM
Hot breakfast and beverages are available for in-person attendees
or virtually through the link below
Pediatric Grand Rounds Live Stream
Thursday, November 13, 2025
8:00 a.m. – 9:00 a.m.
Speaker: Patrick Moeschen
Parent Project Muscular Dystrophy
Title: Not Living to Wait, Not Waiting to Live – Thriving with Muscular Dystrophy
Educational Objectives:
Discuss the adult patient experience in rare disease.
Recognize the importance of seeing the person behind the diagnosis, not just focusing on the disease label such as muscular dystrophy.
Explain the need to partner with the family as part of comprehensive patient care, recognizing families’ expertise and role in decision-making, especially when dealing with the transition from a pediatric patient to an adult patient.
Patrick Moeschen recently retired after 28 years of teaching music, instruments, jazz, and concert bands at the middle school level. Diagnosed with Becker Muscular Dystrophy in 1985 and re-diagnosed with Limb-Girdle 2E Muscular Dystrophy in 2012, Patrick continues to lead an active life working in education and advocating for individuals living with muscular dystrophy.
Mr. Moeschen received his Bachelor of Arts degree (Magna Cum Laude) from the University of Massachusetts Lowell in 1995 and began teaching middle school band and music at Woodbury Middle School in Salem, New Hampshire. Achieving a master’s in counseling and human relations from Liberty University in 2006, he was awarded the Teacher of The Year for the state of New Hampshire in 2007 by the Wal-Mart corporation. In addition to teaching, Mr. Moeschen is an advocate for children and adults with muscular dystrophy and has presented at disability conferences across the United States, as well as Australia, Italy, Belgium, and the Netherlands. In 2010, Patrick delivered the keynote address in Denver, Colorado at the Parent Project Muscular Dystrophy national conference, and continues to travel throughout the United States speaking about adult disability in culture and society.
In 2020, Patrick began a consulting role with Parent Project Muscular Dystrophy (PPMD), one of the largest grassroots organizations in the United States focusing on care, research, and advocacy for children and adults living with muscular dystrophy. In his role, Patrick runs the 75-member Patient Adult Advisory Committee (PAAC). The PAAC elevates the patient voice in lobbying Congress, as well as organizing, designing, and implementing workshops, webinars, and seminars at disability conferences throughout the world.
Hey? That’s me! I’m also a good dancer, I enjoy long walks on the beach and I’m a lot of fun to be with. Please tip your waitstaff. Thank you.
Stay awesome, stay safe, and tune in. When I wink during the livestream…..that’s for you.
Patrick moeschen 
Vanessa sounds like an amazing advocate! Thank goodness you married her. While I’d love to hear you speak, I’m in British Columbia and 5am is just too early, sorry! Sadly Duchenne took our son at age 28 five years ago.