Living on the frontlines

I am very excited this year about the Meeting of the Minds taking place at this year's HPS Network Conference. We are expecting 25 doctors and researchers (maybe a few more) to participate. Last year the event was a great success, and this year with more than double the participants, we are hoping that our great minds get together, share notes, knowledge and expertise in the quest for the cure!  I want to introduce some of our participants, and that will take a while! Grin.  Meet Dr. Michael Beers! You can learn more about Dr. Beers at: https://www.hpsnetwork.org/en/bios/michael-f-beers-md

We have added a new member to the patient registry. This now puts us at 88 people to go on this year's Hundred People Search. Yes, that is behind where we usually are, but we didn't have a conference in Puerto Rico this year. We usually pick up a lot of new members there. Keep up the outreach - there are developments coming for which this will be hugely important. 

This past Friday the Food and Drug Administration (FDA) hosted a public meeting to discuss the needs of patients with Idiopathic Pulmonary Fibrosis. I have a lot to say about the meeting, but I want to begin by saying that it was one of the toughest medical meetings I’ve ever been a part of. My hat is off to all of those with pulmonary fibrosis, their families and the advocates, who took part on behalf of the thousands more who could not. It was a meeting full of tears and sorrow and frustration. I am told that even one of the doctors from the FDA got teary. While I don’t want to make people cry, hearing that really moved me. It makes you feel like you were heard. Now, onto the meeting. The Hermansky-Pudlak Syndrome community has a long way to go in our work with the FDA. The past 22 years (long before I was ever involved) has been a journey of learning new things – medicine, politics, non-profit law etc. Until now, we haven’t had much to do with the FDA because our research hadn’t pro