Feedback on the documentary RARE

When I returned from Puerto Rico, I was very moved to find a little package of messages from secondary school science teachers who had been able to attend a screening of the documentary “RARE” at a recent teacher’s convention.


For new readers, the film “RARE” follows Donna Appell, her daughter Ashley, and myself through a three-year journey to fill a drug trial for a potential treatment for the pulmonary fibrosis of Hermansky-Pudlak Syndrome.


Donna also got a packet of these messages, but she got hers before we left on our trip.


I couldn’t help but be moved by the sweet messages of support. It encouraged me to hear how moved some people were by the film because that gives me even more hope that this film will be a breakthrough for awareness of HPS. Even more than that, we believe the film tells the story of rare diseases in general that face so many extra challenges to finding treatments, and someday, cures.


It feels a little funny, honestly, to have someone tell you you’re inspirational, or brave (as many of the messages did.) One never thinks of one’s self in such terms. I know so many HPS’ers that make my experience look so easy that it makes me uncomfortable to take in such compliments. After all, we don’t mean to be inspirational or brave – we weren’t exactly given much of a choice. We’re just doing what we have to do to survive, and hoping that the HPS’ers of the future will benefit from what we’ve done. How could anyone do any different?


Still, I’m happy for the compliments. I’m even happier that it seems the film made such a strong impression on the outsiders that have seen it.


I’ve now seen the film screened twice, but always to an HPS audience. It would be interesting to see the reactions of an audience for whom HPS, and those of us appearing in the film, are foreign.