Minoryx are expanding

[StevenSims]

minoryx.com/minoryx-therape...

There's got to be something promising in min102? They've started a trial for another neurological disease and hopefully soon for ALD?

All the best

Steve

[KennyInPA]

I think it is awesome that they are branching out onto other incurable diseases to possibly provide hope. I am off to Boston next week for my 6 month visit with all the fun testing. Looking forward to see if I have any change thus far!

[SongStream in reply to KennyInPA]

I'm just a little behind you. Funny, but now I think of pack mules when going to our routine visits : )

[KennyInPA in reply to SongStream]

I wish I could FedEx my drugs to and from would be so much easier!

We have a tight 35 minute connection in Philadelphia which includes a terminal change via bus. Coming soon to the Amazing Race, will they ever make it to the gate in time with all the drugs in tow? Will they have time to make a bathroom stop or resort to peeing in an airplane lavatory?! Always an adventure haha

[StevenSims in reply to KennyInPA]

Good luck! I'm so glad I've only got a quick 55minute direct flight! It's so convenient from my local airport! I'm back in July for my 12 months appointment!

All the best

Steve

[KennyInPA in reply to StevenSims]

That is great! There is one non-stop flight from my local airport (Harrisburg) that runs daily, but it always departs in the evening. It also has a high cancellation rate and they rebook you through Philadelphia anyway. We decided to catch the super early flight with the connection to make the urologist appointment in the afternoon. On my last trip they cancelled our return flight (maintenance..allegedly) and put us up in a hotel and we came back the next day. It all sounds silly as it can be driven in about 6 1/2 hours, but it does save wear on the car, so we go with the flow!

[StevenSims in reply to KennyInPA]

I stay in a hotel overnight and make a bit of a jolly out of it with a nice meal! There's no rushing then!

[KennyInPA in reply to StevenSims]

We steal all the soap and free coffee too, make it a good time haha

[SongStream in reply to StevenSims]

Man, I'm so envious! I posted about my hellacious drive in torrents of rain and traffic just to find that they cancelled my appointment because the blood kit didn't arrive!

I later was compensated for about $10 for my troubles, less than the actual expense. That concludes my free speech message. : )

[SongStream in reply to KennyInPA]

Thank you, thank you for the great deep morning belly laugh! What a great way to begin a day!!

[SongStream]

So good to hear about the encouraging and expanding studies on ANY oprhan disease especially ours! In Steven's link, it seems Minoryx omitted that VLCFA also affects the testes or the Leydig cells of the testes. I wonder why since we include our responses in that particular questionnaire. Singing: "Nobody knows the troubles I've seen".