I saw Ken, Aaron, and Songstream at ALD connect... - AMN EASIER


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I saw Ken, Aaron, and Songstream at ALD connect annual meeting today.

artortega78 profile image

How was your experience with the ALD connect annual meeting today? I attended that conference to see what treatments are for people with ALD/AMN and ask questions about Min-102, Brain MRI with contrast, and future remyelinating treatments for people with ALD/AMN.

15 Replies

I managed to listen to a few which were very interesting but will have to catch up with the rest on you tube.

I attended the introductory remarks and the women's sessions. It's reassuring to know that they have started research including women, and that my daughter and her family will have some strategies for treatment in the future.

It was great talking to you guys! Hope you can join us for our next call which we do monthly. Wealth of knowledge we can learn from each other!

Good to see you! I got a lot from the men's group and the expert sessions. Good news for the women! Minoryx will have a clinical trial down the pipeline. The 2 year men's study data should be available end of next month. Gene therapy will be the way to go and may be the treatment for AMN before the troublesome issues arise. But that is dependent on the future of uniform testing for newborns and carrier status.

I also attended and was happy to see that it was so well attended! I think the virtual meet worked!

I'm looking forward to catching up on the sessions I missed.

It was a good conference, and it was great to see many other AMN men around the country and world! That's the positive.

Here's the negative. When I posed the following question to specialists during the Expert Q&A session - what are the immediate next steps if diagnosed with a progression to adult cerebral disease, and how many centers in the U.S. are currently performing BMTs for adult men? - they never really got around to answering either part of the question. A "wait and see" response is inadequate for a situation that could literally mean life or death.

For all that we talk about symptomatic treatment, which is wonderful, most of us don't really have much of a clue what will happen to us if we go cerebral. This is unacceptable.

artortega78 profile image
artortega78 in reply to Aaron98

I found this on Adrenoleukodystrophy news: adrenoleukodystrophynews.co...

Yes, it is worrisome that we are at risk of developing cerebral ALD in the future. I think the ALD experts should have presented more information about how to get a BMT for adult men with cerebral ALD. Just do MRIs every year and hope for the best.

SongStream profile image
SongStream in reply to Aaron98

I hear you. I do think there are only 4 BMT sites available in the U.S. I still don't have a clue what's going on. These are valid concerns!

Aaron98 profile image
Aaron98 in reply to SongStream

As I said before, this is unacceptable, Steve. Since you are living this right now, you deserve real answers. What are they pursuing for you right now?

I want to talk to someone my age or older how their experience was. I do know that a BMT is generally not recommended for age 60 or older. I have advanced AMN and osteoporosis with arthritis and the treatment will only compound matters if successful and can bring additional problems affecting one's quality of life. Also, lesions can continue to advance (and symptoms) while your body is building back its immunity (6 mos.) As you can see, I've done a lot of research on this and I'm comfortable with it. It is what it is. But men, younger, remain steadfast and proactive because your life may depend upon it. The younger you are and the earlier stage of involvement can result in a greater outcome. On a most positive note, I asked my consulting Stanford neuro if she had a cerebral adult patient and she had only one. But the most bewildering is that his lesions became no longer active!

HenryW profile image
HenryW in reply to SongStream

Hello. A while back, you seemed to say you participated in a trial for a potential AMN cure. Am I correct? Can you please tell me which trial?Thanks, Henry

SongStream profile image
SongStream in reply to HenryW

Hi Henry,

It was the Min-102 which is now in an extended study with all using the real drug.

HenryW profile image
HenryW in reply to SongStream

Thanks for the response. How long in total have you been using MIN-102? Have you any comments?Thanks, Henry

SongStream profile image
SongStream in reply to HenryW

I was in the trial for 2 years. The most prominent effect was that my nerve pain was less intense which other men had also commented. Since it ended, my pain has become more pronounced. I had walked further on each 6 minute walk test but I can not say there was anything remarkable. Continue to stretch and challenge your limitations. Use it or lose it has always been my mantra.

HenryW profile image
HenryW in reply to SongStream

Thanks for your response.

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