ALD Connect EL-PFDD 7/22/22 - Your Comments Requested!

[KennyInPA]

On July 22, 2022, ALD Connect will host an Externally-Led Patient-Focused Drug Development meeting to provide an opportunity for the Food and Drug Administration (FDA), industry partners, and other key stakeholders to hear directly from adults with ALD and their caregivers. They will explain the impact the disease has on their daily lives, what meaningful treatments would be, their experiences with currently available treatments, and their hopes for the future.

They are collecting comments from the ALD community. Comments will be included in the Voice of the Patient report. If you can spare a few minutes to leave a comment on your journey with ALD, they would much appreciate it!

aldconnect.org/pfdd/

or email: [e-mail]

Thanks!

[COwithAMN Administrator AMN EASIER Volunteer]

Thanks KennyinPA for posting this.

Looking at the agenda, this looks like it could be a really useful and important event. From my own perspective, I would say that there are several areas where even marginal improvements in treatment could improve things: spasticity, bladder and bowel function are my big three.

I will try and drop-in and perhaps add my 2c worth to the discussion.

Chris

[SongStream]

Thanks for this! I have been thinking that is had appeared that AMN causes or feels like premature aging because of the symptoms we have. I say this 'cause ACALD has or feels like my AMN symptoms have become worsened.

[Aaron98 in reply to SongStream]

Yes, exactly, Steve. I'm said many times that AMN essentially accelerates the aging process. So many of the symptoms are similar to those of an elderly person.

[SongStream in reply to Aaron98]

I have so many wandering thoughts of AMN and ACALD (lurid).

[nan17]

This forum is also an opportunity for women to voice their experiences with ALD and hope for better recognition that ALD/AMN affects hundreds of women as well as men, and promote the need for research and drug development for them. Thanks Kenny.

[SongStream in reply to nan17]

Yes!

[Abcd1Kat]

Thank you all who participated. The video is up on the ALD Connect website aldconnect.org/pfdd