Swanbio Gene Therapy Trial

[Golfdog3]

Has anyone researched the swanbio gene therapy trial? Or even began the trial? I was wondering how often you would have to go to Boston etc. I can get around but my balance isn’t great and am getting weaker. Wondering if it would basically halt the progression or possibly make it a little better? I am 44 and my job requires me to get around construction sites, etc. thank you for any insight or information on the trial.

[Chazhl]

My response from Swan Bio Inquiry:

Clinical Trials <[e-mail]>

Attachments

Thu, May 26, 8:31 AM

to me, Clinical

Dear Mr. Leedy,

Thank you for reaching out about SwanBio’s work in AMN and your interest in supporting our studies. Currently, we are recruiting for an observational natural history study of patients with AMN to characterize the course of AMN-related disabilities over time (NCT05008874). This study will help us learn even more about AMN and inform the design of our future interventional trials. I have attached a flier with a little more information on it for you.

In addition, the FDA recently cleared the IND for our investigational AAV gene therapy candidate for AMN, and recruitment will begin shortly in the US. I will have more information to share about the study details as we progress.

If you are interested in exploring participation in these studies further, please let me know where you are located and I will connect you to a site nearest you for further conversation about eligibility and participant requirements.

In addition, if you would like to follow along the company’s progress, you can check our website for updates and/or sign up for our email distribution list.

If you have additional questions, I am happy to answer what I can at this time.

Wishing you all the best-

Sincerely,

Eileen Sawyer

[Chazhl]

Follow up info on SwanBio study:

Dear Mr. Leedy,

Great. For the natural history study, we have a site recruiting at Stanford. The study coordinator there is named Christina Frater, and you can reach out to her directly about the study at [e-mail].

For the investigational treatment study, the site that will start recruiting shortly is in Massachusetts. If that is still of interest to you, I will introduce you to the study coordinator there on Tuesday.

Kind regards

Eileen

I will post any further responses from them.

[quilling in reply to Chazhl]

Eileen thank you so much for your quick and informative reply. As a 62 year old ALD woman I know I do not meet criteria but am hoping someday these trials will include women and find help for everyone. Thank you for helping our community.