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My Heart Aches

By January 26, 2016 October 30th, 2016 Tracy's Blog

Although the fight against Duchenne is draining and difficult and often discouraging, I usually like to blog about the grit and determination we need to succeed, and the flip side of every rough patch. Warning: Today I just don’t think I can do it. A boy participating in the HT-100 “Halo” trial is in the hospital in critical condition, and dosing and new enrollment in the trial has been suspended. All boys, even kids like Charley who have been on the drug for up to 22 months with no side effects, must stop dosing and wait until further notice.

My heart aches for the patient who experienced serious health issues and for his parents. My heart aches for the boys who were seeing benefits and now have to stop taking the pills that may have been increasing their strength. My heart aches for the children who were lined up to screen for this trial over the next few weeks and months, as that ray of hope has dimmed for the moment.

Despite this crushing development, I remain hopeful that the review and studies being conducted by Akashi Therapeutics will allow the clinical trial to resume later this year. As all Duchenne families know, every month, every day, every minute is precious. And while time is of the essence, the trial will not resume until Akashi and the FDA and the doctors and the patient community are certain we understand what happened and why, and that it is safe and warranted to resume dosing.

Our determined community has had to remain strong for the long and tenacious fight to end Duchenne. I am hopeful that my next blog entry brings more positive news for everyone involved. I am praying for the hospitalized child and his family, and I know so many of you out there are doing the same.

For anyone seeking additional information, Akashi has posted it here.