The Permanent Mission of the State of Kuwait to the United Nations and Voices for Duchenne are honored to invite you to attend the premiere of a global documentary, From Strength to Hope: A Call for Global Action, in recognition of World Duchenne Awareness Day 2025.
Date: Friday, 5 September 2025
Time: 1:15 – 2:30 PM
Venue: United Nations Headquarters, Conference Room 4
Vanessa and I entered the conference room along with more than 100 people from all over the world. The United Nations was in session and so delegates and their representatives had to choose which session to attend.
In the big meeting room that you see on T.V., a resolution was being debated about sanctions and trying to slow down Iran from developing a nuclear weapon. Vanessa and I were lucky enough to pass through that room silently and quickly, but we heard the United States ambassador discussing that topic.
I quickly began to realize that people do this as their work each day. Teaching kids how to hold drumsticks and love The Beatles paled in comparison to this, but yet, here I was, listed in the programme as a “patient advocate” and an expert on living with muscular dystrophy. I was drafted into that service in August of 1985. Forty years and one month later, I was about to make remarks on a short film depicting life with this messy struggle. The film featured families from Africa, Australia, the United States and other nations. The takeaway goal for the audience was to turn hope into action. Patients living in the United States have far better access to care than in other parts of the world.
Before the meeting began, I spoke with a woman who runs a disease clinic in Zambia. She told me the story of two boys who visit her clinic at least twice a year. First, they borrow a neighbors ox cart and their father pulls it a few miles to the main road where the bus stop is located. The bus is not accessible, so the parents need to carry their children on. One is a teenager and the other is 8 or 9. Neither can walk and there is no way to take their wheelchairs on an ox cart or the bus.
Once on the bus, the parents need to hold on to the kids, who have balance issues due to lack of muscle strength and the progression of the disease. The road is not paved and the bus ride takes more than 2 hours each way. The family never misses appointments.
Meanwhile, we bitch about people at Starbucks who take too long to make our order, or whine about Netflix having ads.
The permanent representative of the state of Kuwait to the United Nations hosted the meeting. His son lives with Duchenne, and he and his wife are lovely people who understand that progress in rare disease needs a global coalition….so they are building just that. We also heard remarks from the director general of the World Health Organization as well as the Deputy-Secretary General of The United Nations, and a gentleman named Steve Way, who is also a patient advocate and actor on the Hulu series Ramy.
All shared the same message: the world needs all of us to come together to work on shared goals. Life is not about what divides us, but is instead about what brings us together.
Following this, we viewed the film and then I was escorted up to the speaking platform. I was in front of a computer stations with buttons marked “yes”, “no”, and “hold”. There was also a translation earpiece for when delegates are speaking in foreign languages.
Taking a deep breath, looking out at my wife and soaking in the room for a brief second I felt like I did not belong on this stage at this moment with all of these important people.
I swallowed my nerves and began speaking from the heart. I’m not good with notes. I sound robotic and do not connect well to an audience. Vanessa filmed part of my talk, which you can see HERE and HERE.
When I finished by asking the world not to leave rare disease individuals abandoned, my friend and colleague Pat Furlong spoke about her two sons who passed in the 1990’s. Neither one of them lived to age 20, due to heart failure from Duchenne. She speaks of her sons often, so often, that I feel like I knew them, though Pat did not enter my life until almost a decade after their passing.
As always, Pat also spoke without notes, and did so eloquently. She spoke about a time period that both of us know well: the rare disease outlook in the 1980’s and 90’s. Doctors told families to “take the kid home and love them” after being diagnosed with MD. There is no cure, there is no treatment, and there is little hope. Forty years later, there is still not cure, but there are a few approved therapies that show promise, and, thanks to more and more people working together, there is plenty of hope.
Pivot. I wrote all of the above words on the morning of September 10. Now I am finishing the post early on the morning of September 11. Yesterday, we had more polarizing violence take place in our society. On September 12, 2001 and for months after, I felt unity that I have not felt on a large scale before or since. I write about what an honor it was to help carry a torch of hope last week, and today I again reflect on how the human race has not yet grasped the fact that it is not good to kill one another.
We need to take care of each other in order to keep the flames of hope alive, or what’s the point of any of us being alive?
For a brief moment, inside a conference room in New York City at the United Nations, I felt unity once again. Let’s pause, pump the brakes, slow down, and remember that we can dare to hope.
Stay safe, stay awesome, and stay tuned.
Patrick moeschen 