Okay friends, let me tell you why Iām mad today
I have a neuro-muscular disability called Muscular Dystrophy.Ā It affects all the muscles in my body, making me the weakest of weak bois.Ā I canāt walk, lift my arms above my head, along with a whole host of other things we wonāt get in to now.
Why does that matter?Ā Because today I woke up to a text from my brother with this image attached:
For those that donāt know, the MDA (Muscular Dystrophy Association) is an organization that funds research for a cure for the 30+ forms of MD, as well as fund summer camps and a few other things.Ā Ā
Back in the day, up until 5-ish years ago, the MDA had a huge telethon every Labor Day weekend.Ā For more than 24 hours, celebrities would come and perform to raise moneyĀ āfor the kidsā.Ā It would cut between the national telethon and the local chapter, where you could see locals who had MD talk and beg for money.
Here lies the issue both I and many other adults with MD have with the Telethon. The telethon exploits families, mostly with young kids, to make viewers feel bad for the poor children who arenāt normal. Like seriously, the way the telethon treats these stories youād think all the kids die before their 18th birthday.Ā And when the telethons started in theĀ ā60ā²s, that was true.Ā The life expectancy for people with Duchenneās, one of the most common forms, was not good.Ā But with advances in medicine, people with Duchenneās, as well as many other types, can live long, happy, healthy lives.
Hereās the thing, though. MDA hasnāt updated their narrative.Ā Notice in the image above, this is aĀ ākids telethonā.Ā And no, thatās not telling you about the kinds of entertainment theyāll most likely have--though itās usually kid friendly anyway.Ā I know from experience, having a rarer form of MD (LAMA2, if you wanna know) that the MDA doesnāt care about me.Ā They donāt help with paying for medical equipment anymore.Ā Back in the day they used to have support groups, but most chapters have stopped those too.
There are so many better organizations to give your money to, to help both children and adults with muscular dystrophy live full, happy lives.Ā My personal favorite is NMDUnited, who is both founded and run by people with MD.Ā I know half the board, and they are all fantastic people who want to live as independently as possible.Ā Please, if youāre going to support either of these organizations, please support NMDUnited.
My ask box is open if you have any questions!Ā I might add on to this later idk
Ā Website:Ā Ā https://www.nmdunited.org/














