Living on the Frontlines

Photo test

Living on the frontlines — Fri, 24 May 2013 20:50:00 GMT

I will explain more about this photo later. I'm just testing right now....(read more)

Eighth Annual HPS Network Conference Puerto Rico

Living on the frontlines — Fri, 24 May 2013 20:32:00 GMT

The HPS Network Puerto Rico Conference will be on August 24th. Learn more about it here: https://www.hpsnetwork.org/en/events/2013-08-24/eighth-annual-hps-network-conference-puerto-rico...(read more)

The guy with the lungs

Living on the frontlines — Fri, 24 May 2013 20:05:00 GMT

I’m just back from attending the American Thoracic Society. I have lots to blog about that, but this isn’t the entry that will have a lot of commentary about the meeting. It’s working better for me to write in pieces of memory. I have a sort of plan for...(read more)

Not a safe book, but so far, a good one

Living on the frontlines — Tue, 14 May 2013 05:53:00 GMT

I got up the nerve to look again for the book by the author I heard on the radio. I have a temporary reprieve. I couldn’t find it as an audio book, at least not yet. It’s been a problem lately. Several of the books I want to read are not yet available...(read more)

Expectations

Living on the frontlines — Sun, 12 May 2013 20:07:00 GMT

Today I heard another radio interview with another writer whose book sounded interesting. At first I was sure I was going to add it to my list of books I need to read, but as the interview progressed, I wasn’t so sure it was a book I should read. Instead...(read more)

HPS Network attends Guarde La Fecha: Conferencia de Salud y Bienestar de El Bronx

Living on the frontlines — Sat, 11 May 2013 21:46:00 GMT

Brenda Lopez, representing the HPS Network, attended Guarde La Fecha: Conferencia de Salud y Bienestar de El Bronx at Fordham University in April. The event offered a wide variety of seminars on various health topics and attracted the read more:...(read more)

The big wide world of research

Living on the frontlines — Mon, 06 May 2013 19:10:00 GMT

Some of the HPSers have been having a conversation lately about the state of research. We are an impatient group. You can’t blame us. We’re watching our friends grow sicker, need lung transplants etc. We have an ever growing younger generation as people...(read more)

Where have all the words gone?

Living on the frontlines — Sun, 05 May 2013 22:10:00 GMT

This morning I heard an interview with an author on the radio. Apparently, he’s quite famous, although I hadn’t heard of him. I guess I haven’t had as much time lately to be very well read. Or, I’ve had a lack of variety in my reading. He was very funny...(read more)

Whitehead Institute and HPS Network Celebrate Rare Disease Day

Living on the frontlines — Fri, 03 May 2013 22:12:00 GMT

The Hermansky-Pudlak Syndrome Network (HPS Network) was one of four rare disease patient advocacy groups to partner with the Whitehead Institute for its celebration of Rare Disease Day on Feb. 28th, the International Rare Disease Day Forum. Carmen Camacho...(read more)

Screening of RARE held in New Britain, CT

Living on the frontlines — Fri, 03 May 2013 22:08:00 GMT

Yeida Soto, a member of the HPS Network, partnered with the nursing program at Central Connecticut State University to hold a screening of the documentary RARE. The documentary follows the HPS Network through a phase III clinical trial to try to find...(read more)

HPS Network and ATS Foundation partner to offer research grant

Living on the frontlines — Wed, 01 May 2013 23:51:00 GMT

Oyster Bay, N.Y. – The Hermansky-Pudlak Syndrome Network (HPS Network) and the American Thoracic Society Foundation have partnered to offer a two-year research grant studying the pulmonary fibrosis of Hermansky-Pudlak Syndrome. Funding will be awarded...(read more)

The Balance of Life

Living on the frontlines — Wed, 01 May 2013 23:46:00 GMT

I have always had a problem with achieving balance in my life. I always, and have always, had more to do than I could ever get done. I can’t remember the last time I ever had the sense of having everything finished. Honestly, I’m not sure achieving that...(read more)

A tough week

Living on the frontlines — Tue, 23 Apr 2013 22:33:00 GMT

Now that I’ve blogged about how the trip to NIH went from a health standpoint, I thought I’d blog a bit about how it went from an emotional standpoint. Honestly, it was a tough trip this time. In past years I’d always tried to go to NIH with a friend...(read more)

Health Update: NIH visit

Living on the frontlines — Wed, 17 Apr 2013 17:50:00 GMT

After a three-year absence, I returned to the National Institutes of Health Clinical Center for a check-up as part of the natural history study on Hermansky-Pudlak Syndrome. The results were overall a mixed bag, but mostly good news. I had much more anxiety...(read more)

Appell speaks at Maternal and Child Health Bureau

Living on the frontlines — Fri, 05 Apr 2013 19:13:00 GMT

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome Network, was honored as guest faculty and gave the opening plenary session at the Maternal and Child Health Bureau Developmental-Behavioral Pediatrics Fellowship Training Annual Meeting...(read more)