Why do we want to party for Duchenne? Well, mainly because we want everyone who participates to enjoy themselves as if they were partying. But also because we see the meaning of the word 'party' as being twofold. We want to advocate for Duchenne patients belonging to the poorest communities who don't have the resources necessary for medication, doctor's appointments, or something even as simple as a wheelchair, a toilet aide or a urine bag (as boys with Duchenne cannot stand up or even sit up at some point they need this to urinate).
But that's not all. It's important to bare in mind that these kids are not only at a physical disadvantage but also a financial one. Their families usually have barely enough to put food on the table and sometimes even that is touch and go. So forget about aides and especially about the most essential tool to escape poverty: education. Because physical work is out of the question for these kids due to their severe disabilities. But given the right kind of education, they might be able to learn skills that would allow them to make a living for themselves, for example coding. It is also important to note that our Duchenne kids who cannot walk anymore also cannot go to school anymore because their parents are simply not able to afford a car so that they cannot take them to school and because - even if they could - the schools don't have the facilities to make sure that a Duchenne child can safely be there especially if they don't have a wheelchair. In poor countries like Pakistan public transport is also practically non-existent, and to the extent that the buses are running, there is no accessibility for the disabled.
To this end we have set up a tutorship programme with the students of LUMS - the prestigious Lahore University of Management Sciences in Pakistan - to provide our Duchenne kids with online classes so that - in spite of their financial AND medical hardships - they can work towards a future where they might have some form of financial independence. Now, to facilitate these sessions all these kids need an internet connection and a laptop or smartphone. Not too much to ask for right? Wrong, because as we just explained their families simply cannot affort this. That is why we will include these items to the party favors listed below!
The way we have set up our party is that our partygoer i.e. YOU can see the aides which your money will go towards financing so that you know just how much your contribution means on a practical level for our Duchenne kids.
Now, which gifts can you (figuratively) bring to the party? Party with us and find out what you can bring to the table!