Living on the frontlines

Carol Silva, daytime and afternoon edition news anchor for News 12 Long Island, won the first media award from the Hermansky-Pudlak Syndrome Network for her coverage of the HPS Network’s Christmas concert event.  Her story not only generated awareness about Hermansky-Pudlak Syndrome in the general community, but it helped to make the 2011 Christmas Concert the most successful yet. Silva attended the HPS Network’s annual gala dinner at the 19 th Annual HPS Network Conference to receive the award. 

Carmen Camacho, regional coordinator for the HPS Network in New England, is hosting a BBQ for HPS families and friends May 26 th at 2:00 pm. Hot dogs and burgers will be provided, but guests are asked to bring another dish or drink to share with the group. To RSVP, contact Carmen Camacho at: camachoc2000@yahoo.com . 

I saw this article on the twitter feed for the Pulmonary Fibrosis Foundation. While this patient does not have Hermansky-Pudlak Syndrome, I thought the story was inspiring - both for people like me who will likely one day need a lung transplant, and for our HPS transplant heroes who already have their new lungs.  This man received his lung transplant in 2009. He has made this 70-story climb twice since then! I can't imagine doing that, even before I had pulmonary fibrosis! It's very inspiring to me!  http://brighton.patch.com/articles/double-lung-transplant-recipient-makes-second-70-story-climb-since-surgery

 Registration area - HPS family catching up after a long year.   Registration table - thanks to all the volunteers who get us all registered!   HPS'ers meeting up for the first time - here are two first-timers talking to me in the registration area.   For the first time, we had a session on Friday afternoon just going over all the information in the packet everyone gets at registration.   Me talking to the session about things to help them get the most out of the weekend.  Thanks to Joe Sipe for sharing his photos with me! He took these shots. It's so hard for me to concentrate on being a photographer when I'm worried about running the conference. I'm so grateful to those in the HPS family like Joe Sipe who are willing to share their photos! 

We are very open about our meetings. We hold a business meeting at conference with the HPS Network board of directors, and anyone else who wants to come. These are usually members who are very involved in projects for the Network who have an interest in some of the business to be discussed. We have a good time. And, of course, it wouldn't be a Thursday night meeting without some dinner! 

 The volunteers work for days and days before conference getting everything ready. The Appell household is transformed into one big workshop! Welcome to the dining room/packet making area.   Late, late at night in the HPS Network office.   Everyone's HPS grandma- Ashley and Richie are so good to share their grandma with all of us.  HPS Network Employee of the Month - the copying machine. I hate to think how many rain forests we're taking out with all of the photocopying. Perhaps in a few years we'll have a techie solution to save more paper. 

RARE, a documentary following the Hermansky-Pudlak Syndrome Network (HPS Network) through the process of a phase III drug trial to treat the pulmonary fibrosis of HPS, will be screened at the Brooklyn Girl Film Festival March 31st at 12:30 pm. The film will show at 721 Franklin Ave, Brooklyn, NY. Come out and join the HPS Network for this awesome event! For more information, or to buy tickets online, go to: http://www.eventbee.com/v/bgff/event?eid=890784284

 Taking a break after lots of walking in NYC. Jess, Mike, Ashley, me (Heather) and Donna.   Ashley, Jessica and Alyssa - our huge HPS supporters! Grin!   We're at Ground Zero listening to the story of one of the security guards who was there that day.   Carmen at dinner Part of the gang - Mervin, Donna, Ashley, Mike and Nancy.  Thanks to Christian Hernandez for taking these awesome pics! 

The Coalition for Pulmonary Fibrosis (CPF), the Pulmonary Fibrosis Foundation (PFF) and the Hermansky-Pudlak Syndrome Network (HPS Network) joined forces to co-sponsor Fibrosis Across Organs, a first of its kind scientific symposium exploring the possible common disease pathways of fibrosis in all organ systems, March 8-11, 2012 in Denver.   The event was convened by the American Thoracic Society (ATS).     Fibrosis can affect the lung, liver, kidney, heart, skin and other areas of the body and claims millions of lives globally.  Most fibrotic diseases are progressive, irreversible and ultimately deadly. These high level discussions, experts believe, will advance the understanding of related fibrotic mechanisms and lead to treatment of fibrotic diseases.  The meeting brought together top scientists, researchers and physicians from academia, clinical practice and industry to identify the shared molecular and physiologic responses operative during tissue injury and repair. More than 60

I'll post more later explaining what the Dare to be Rare program is all about. I just wanted to post this little clip before I missed it. Can you find the Dare to be Rare group in the crowd?

 Kids at the HPS Conference!   Yeidyly and Christian, Carmen and Frankie's son.   Part of the HPS gang at Ground Zero in NYC. We're a little tired here. Grin!   An awesome pic of Nancy and Yeidyly. Nancy just celebrated six months since her lung transplant!  Ismael! Ismail is one of our transplant heroes. Currently, he's waiting for his second lung transplant. Please keep him in your prayers. 

This is another item I'm passing along for anyone who might be interested.  Israel on the Horizon   Summer Experience in Israel for Blind and Visually Impaired Youth > summer 2012   Ofek Liyladenu Israel National Association of Parents of Blind and Visually Impaired Children, in conjunction with the Jewish Institute for the Blind in Jerusalem, are planning the first special Israel summer tour program for blind and visually impaired youth, ages 15 to 21. The pilot trip will be for twelve days, combining educational touring throughout the country with outdoor activities and social programs with Israeli youth. The 2012 summer program has reached out to include visually impaired youth from North America, England and Australia.     The Israel experience has always been seen as an essential part of fostering Jewish identity and creating a bond between Jews around the world.  Today, over 300,000 youth, 18 to 26 years old have participated in the Taglit Birthright program, brin

I I'm just posting this reminder about this program. This is   our LAST CHANCE to apply for this exciting new program!   APPLICATION DEADLINE APRIL 1 ST   This pioneer program will focus on fostering a sense of innovation and autonomy in young students by allowing them to determine their course of study during the week of the program. Students will ultimately focus on one investigation which they will showcase at the Innovators Expo. However, multiple branches of science will be explored throughout the program through extension activities.   A unique component of NFB Project Innovation is how it will serve two age groups simultaneously. The first of these two groups will be comprised of students in grades 3-6 (ages 7-11).  This group, called Junior Innovators, will stay at the NFBJI for three days, July 25-29.** Twenty blind students will be accepted into this group.    The high school students, called Senior Innovators, will serve as junior advisors. Students in grades 9-12 (ag

 Heather (me), Jackie, Mike and Yeidyly in New York City. Jackie is such a gift to the HPS Network. She organizes all of our food for the event, and she plays tour guide in the city when a group of us are there. Next to her is Mike from the UK, and Yeidyly, an HPS'er from Puerto Rico who is a dear friend. Not only is Yeidyly an HPS'er, but she's researching HPS as well.  I got caught! It's a weight watchers vacation! Yes, yes, I know. I've taken a lot of grief about this pic. Yes, I'm working on losing weight, and I am making slow progress. I did, however, take a little diet vacation in NYC. It's just hard to stay on the wagon when you're not only travelling, but having a good time with friends you never get to see!   HPS ladies in Central Park!   Carmen and Mike at the taping of "the Chew." Some of the HPS'ers got up early to go and be at the filming of this popular food show. I didn't go. My tummy was acting up. I was also just sooo

Dr. Thomas Markello, one of the researchers working on Hermansky-Pudlak Syndrome   in Dr. William Gahl’s lab at the National Institutes of Health, was honored by the Hermansky-Pudlak Syndrome Network as this year’s Doctor of the Year. Dr. Markello is the primary investigator for the multidrug trial to treat the advanced pulmonary fibrosis of Hermansky-Pudlak Syndrome. He’s also been involved with various other aspects of HPS research. Dr. Markello has always been willing to give freely of his time outside of the lab to help the HPS community. He’s made a number of outreach trips with the HPS Network to places such as Florida and Puerto Rico to help HPS patients and to help build awareness of the syndrome in the medical community. 

I’m finally home from conference and it was a wonderful time. It’s hard to explain to someone who hasn’t had the experience of fighting something like HPS and feeling so isolated what it’s like to spend several days with so many people who “get you.” I’m posting about this first, however, because I want to share it. Still, conference was such an uplifting and happy event; I don’t want my grief to tarnish it. If I post this first, it will be followed by so much uplifting news, I hope the effect will be as desired. Grin! As wonderful as conference was this year, I was more aware than ever of the HPS’ers that are no longer with us. I think back to my first HPS conference in 2003 and all the people I met that weekend. At the time most were as healthy (or not healthy depending on how you look at it) as I am, yet so many of them are no longer here. I can’t help but be a bit shaken by the difference a few years can make. Conference isn’t the same without Carmen M. She lived for conference

Here are a few photos from our little adventure in the chaos of Time Square at night! 

Thank you Tillmans!!!!

This is one of those items that came in my e-mail and I know some of my readers are braille readers - so thought I'd pass the request along.  Donations of Braille Books Needed Calling all Braille readers! It's that time again: Time to sort through all those boxes of Braille books in your basement or spare room, and donate those gently used but no longer needed Braille books to the 2012 Braille Book Fair sponsored by the National Organization of Parents of Blind Children and the National Association to Promote the Use of Braille.  Our primary goal is to get more Braille books into the hands of children, youth, and beginning adult readers, so here's what we need most: Books in good condition, print-Braille picture storybooks, and leisure reading (fiction or nonfiction) books. Cookbooks are always in demand, as are books about sports. Children are so hungry for their very own books that every year, despite generous donations, most of our books for young children are gone

Our own Carmen Camacho was interviewed by New York City station X96.3 about HPS and the upcoming conference. Listen to the interview Sunday morning at 7:00 am! 

Today we added another new HPS'er to the patient registry! It's been a busy week. Grin! This puts us at 62 left to find for the Hundred People Search. 

For the first time at the 19 th Annual HPS Network Conference, a special breakout session will be offered for young adults with HPS, siblings of those with HPS, or the children of those with HPS, between the ages of 18 and 30. It’s a chance for the young adults to get to know one another, offer support and explore ways to get involved in the HPS community. The session will be held Saturday at 11:15 am, right before lunch. 

It's been a busy day at the HPS Network! I would wait to post this until Friday, but honestly, I don't want it to fall through the cracks. We added two new HPS'ers to the registry today, moving us to 63 more to find for this year's Hundred People Search. 

Last week we added three new HPS'ers to the HPS patient registry. This leaves us 65 more to find for this year's Hundred People Search (HPS).