Being a part of history

Looking back, it seems so long ago that Maggie was a part of the Trofinitide clinical trial. At 5 years old, my little girl went through 10 weeks of weekly appointments in a different city, to change her life. How many people can say that? I wish she didn’t have to do it, I wish Read more about Being a part of history[…]

The waiting game

For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status. ¬†Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about it, I thought about it. I stalked the Rett family pages, I stalked parents that Read more about The waiting game[…]