Living on the frontlines

The Jewish Guild for the Blind, in cooperation with the Hermansky-Pudlak Syndrome Network, will launch a new call-in support group for English-speaking parents of children with Hermansky-Pudlak Syndrome. Parents of kids of all ages and concerns are welcome to participate. Come to learn something new, get a little support or offer your experience to the parent of a newly diagnosed child. The group will kick off July 5th and be held once a month, unless demand is greater. To sign up, contact Carmen Camacho, (508) 395-7523, or e-mail: camachoc2000@yahoo.com.

The Food and Drug Administration is issuing new rules about the labeling of sunscreens. The new rules are designed to make it easier for consumers to know what they’re buying and if desired, select sunscreens that are most effective in preventing skin cancer and early aging. The new rules, which will take effect the summer of 2012 (although some manufacturers will implement them sooner) will only allow sunscreen products that pass the FDA’s test for protection against both ultraviolet A (UVA) and ultraviolet B (UVB) rays to be labeled as “Broad Spectrum.” Both UVB and UVA radiation contribute to sunburn, skin cancer, and premature skin aging. Sunburn is primarily caused by UVB radiation. Products that have SPF values between 2 and 14 may be labeled as Broad Spectrum if they pass the required test, but only products that are labeled both as Broad Spectrum with SPF values of 15 or higher may state that they reduce the risk of skin cancer and early skin aging, when used as directed.

Angels in Voice, the singing duo of Candice and Crystal Sipe, held their 12th annual concert benefiting the HPS Network, April 15, 2011 at the South Peoria Baptist Church in Peoria, Az. The evening was filled with gospel singing, not only from Angels in Voice, but many of their musical friends. Candice and Crystal’s Aunt Judy Henderson spoke to the crowd at intermission about the girls’ story and Hermansky-Pudlak Syndrome. A free-will offering was taken and nearly $2,000 raised for the HPS Network. Others that helped out with the concert include: Joe Sipe on sound Sue Jordan, who sang a trio with Candice and Crystal Paula Dahl, who played piano Sarah Alfaro and Jim Dangelo sang a duo Pastor Paul Nunez sang a trio with Candice and Crystal Chuck Kinslow, who sang two solos Danny Steinnett, who played steel guitar Judy West, who sang a solo Thanks so much to the entire team in the Phoenix area for their support of the HPS Network. To learn more about An

Today I found a guest blog entry on the Scientific American website. It was yet another one of those cases where I was trying to find one thing, and bumped into something else along the way. What a great thing to bump into! Many of us as patients become like evangelists with religion trying to tell our stories – especially those of us with rare disorders. We want someone to understand, to respond, to “get it.” One of the things I love about the American Thoracic Society meeting is how hard they work to include a patient speaker into the various scientific sessions presented at the conference. Not many scientific groups do that. Even if it’s a quick five minutes, we as patients hope that we’re able to offer a little tidbit that sticks in someone’s brain and comes out when they need the inspiration the most. It sounds like that’s what happened to this researcher. Her blog is about attending a presentation on pulmonary fibrosis at John Hopkins. The patient speaker made an impress

I came across this contest today for 14 - 18-year-old kids with US citizenship. If you know a musically talented kid complaining they're bored this summer, here's a chance to do something and maybe even earn some cash and a trip! Now Accepting Entries! The MusiCares® and GRAMMY Foundation's® Teen Substance Abuse Awareness through Music Contest in Collaboration with the National Institute on Drug Abuse The MusiCares and GRAMMY Foundation's Teen Substance Abuse Awareness through Music Contest offers a great opportunity for aspiring teen musicians to use the healing and uplifting medium of music to help spread the message about the importance of healthy choices and the dangers of drug abuse. The contest asks young musicians to create original music and/or music videos that celebrate healthy and inspirational living, or accurately depict the dark side of drug abuse. Contest: Participants will submit their creative Music Video OR original Music/Lyrics compo

Sometimes things come along in your day that just really touch you. Megan Long is someone I've never met before. She doesn't have friends or family with HPS. Yet, during her genetics rotation, she met Donna Appell and learned about our cause. Now, she's running the Viterra Ironman 70.3 Calgary to benefit Hermansky-Pudlak Syndrome. Let's all cheer her on! Her FirstGiving page is: http://www.firstgiving.com/fundraiser/meganlong/703forhps

Researchers from Dr. William Gahl’s lab at the National Institutes of Health have published a paper in the June 10, 2011 issue of the American Journal of Human Genetics announcing that they have found a new gene in humans that can cause Hermansky-Pudlak Syndrome. The new gene is HPS type 9 and was found in an infant of Indian heritage. The long-term clinical manifestations at this time are unknown.

The National Institutes of Health Office of Science Education has announced a contest for K-12 kids who are US citizens or territory residents. The contest is to create a science experiment that can be used in an upcoming book for teachers. There are a number of rules the experiment must meet. There aren’t big cash awards involved here – the big prize might be the bragging rights and the ability to include a national NIH prize on your college applications (for the older folks). It isn’t too complicated. Check it out at: http://lab.challenge.gov/

Unfortunately, the child care folks somehow didn't understand that the kids were supposed to be in the photo as well. So, this photo is mostly of the adults that were at the conference.

  This is Maria G. making her grand entrance. It was one of the most special moments of conference. She carefully planned what she'd wear, and carefully conserved her energy so that she could make her "entrance" - and boy did she ever. She looked great, and it made an impact on everyone there.   A great pic of Diana!

We take a little moment from the regular content of this blog to issue a quick kudos to America's First Lady, Michele Obama. Love or hate the first family for their politics (I personally love them, but this isn't a political blog) - you can't help but give Mrs. Obama a kudos for leaving Camp David in $29 dress from the GAP. I'm not against wealth. I'm against wasteful and extravagant excess - $6,000 belts and $50,000 purses - that sort of thing. This is America. Everyone can spend money how they see fit, but it sure is nice to see someone in the media's eye, who could make a real case for expensive, be so practical. Make cheap sheek cool!

June 8, 2011 Contact: Donna Appell Founder and President, Hermansky-Pudlak Syndrome Network, (516) 922-4022, or e-mail: dappell@hpsnetwork.org FOR IMMEDIATE RELEASE Landmark Healthcare Proxy legislation passes out of New York Senate and Assembly Committees on Health with unanimous votes Oyster Bay, N.Y. – New York State Senate Bill 3737, introduced by Sen. Hannon, and Assembly Bill A5036 introduced by Assemblyperson Gottfried passed out of both health committees with a unanimous vote and are now seeking additional co-sponsors. The bill, if passed, would be the first in the country to institute an Enhanced Healthcare Proxy option for individuals. An Enhanced Healthcare Proxy would empower individuals to appoint a trusted family member or friend to help make medical decisions and be involved in their care without requiring a determination of incapacitation or forcing them to incur the expense of an attorney to find other legal remedies. It does not,

 This is a painting I finished a while back, but haven't posted yet. It's 11 by 14 inches. $30. This is an 8 by 10 inch painting, acrylic on board canvas - $30.

 Just a few blocks from our hotel and the convention center was a wonderful shopping street. It had a free trolley that went up and down the street from the Denver Capitol building. Not only did it give us something to do close to the hotel, but it made buying the cookies for the display much easier.  This is the Blue Bear at the Colorado Convention Center. I thought it was a riot. It's this huge statue of a bear, but what I thought was funny was the way that instead of facing the street, it is looking inside, as if to day, "Hey people in there...what are you doing?" Here Candice and Crystal are outside the Denver Opera House waiting for the ATS President's dinner to get started.

 Another shot of what the floor looks like before opening day.  One of the nights we were able to go out, we went to a very good Italian restaurant. I can't remember the name, but it's a chain. It's really good though. Later on another night, we endulged in going back for dessert! Then, we waddled back to the hotel! Grin! Well, maybe I waddled - I can't see Candice and Crystal doing that!  Candice and Crystal are manning the HPS booth!  It's raining twins! Eileen, from the ARDS Foundation, is also a twin and her sister was there helping out with the show. It turns out there are two other twins on the Public Advisory Roundtable - Teresa from the Coalition for Pulmonary Fibrosis is a twin. So is John Walsh from the Alpha I group.

 Candice and Crystal right before we put up the booth.  Candice and Crystal after we put up the booth. We did it in under 30 minutes - so much better than the green monster!!!!!! The show floor before the show starts. For first-timers who have never done trade shows before, the transformation of the exhibit hall from this to show time is amazing to see. It's even more amazing how quickly they tear the whole thing apart at the end! I have more pics to post, but I'm having some internet trouble. So, maybe later!

Candice and Crystal Sipe, and HPS Network Vice President Heather Kirkwood, attended the American Thoracic Society’s International Conference in Denver, Co. May 13 – 18 to help create greater awareness of HPS among lung doctors and researchers. The trio manned a booth on the exhibit floor during the meeting and spoke to several hundred doctors and researchers from all over the world about HPS. “I was amazed at how many doctors there were from so many different countries,” said Candice Sipe. “We were particularly interested in speaking to the doctors from India,” added Candice Sipe, “They seemed interested in us since we were adopted from India.” The trio also attended a patient event, called Breathing Better, the day before the international conference opened. At the patient event, Dr. Gochuico addressed a group of pulmonary fibrosis patients and explained to them why HPS research is important to the greater pulmonary fibrosis community. After she spoke, Kirkwood made an app

The HPS Network has partnered with the American Thoracic Society Foundation to offer a $40,000 grant each year for two years to a junior researcher to research the pulmonary fibrosis of Hermansky-Pudlak Syndrome. Currently a review board is reviewing the grant submissions and a winner will be announced soon. The grant is made up of $30,000 a year from the HPS Network and $10,000 a year from the ATS Foundation. The Foundation has also covered the costs of managing the grant. ATS Foundation grants are a way for junior researchers to fund preliminary research so that they can go on to find bigger grants from other institutions later on. Dr. Lisa Young was the first recipient of an HPS Network/ATS Foundation partnership grant. She went on to use the results of the funded research to win a $700,000 grant from the National Institutes of Health. (You can also see this story, and other HPS Network News, at www.hpsnetwork.org .)

This year at conference, as you know by now, our theme was the Academy Awards. In keeping with that theme, we had a very special gala dinner, complete with photographers and a red carpet to walk down into the dinner. For fun, we gave away some Oscars - some serious, and some tongue in cheek. Several people have wanted a list of the Oscars. Well, here it is. You can also find it on the HPS Network Web site at: www.hpsnetwork.org . Unfortunately, my Oscar pics didn't come out very well. It was too dark. Taking pics at the dinner is always a challenge - do you set your camera for the dark lighting, or the fast-moving people? Below is a list of the “HPS Oscars” presented at the 18th Annual HPS Network Family Dinner. Congratulations to the winners! Best Short Film – Raphael Velez Raphael is a high school student with HPS. He made a short film about his first experience at the HPS conference. The film has been a wonderful tool to show others why the HPS conference is so impo

A message from Carmen Camacho! (You all know my Spanish isn't this good!) Hoy y todos los Miércoles, a las 8:30 pm hora este , tendremos el grupo de apoyo en Espanol para padres con niños con HPS. Este es un servicio que nos provee el Jewish Guild for the blind. Es totalmente gratuito!! Si quieren participar comuníquese conmigo vía e mail: camachoc2000@yahoo.com o me pueden llamar al 508.395.7523. Yo le puedo proveer el número de teléfono y el código de entrada. Los esperamos!! Gracias!! Today and every Wednesday, we are having the Parent support group in Spanish, for parents of children with HPS. This is a free service sponsored by the Jewish Guild for the blind, If you want to participate please e mail me at camachoc2000@yahoo.com or call me at 508.395.7523 so I can provide the toll free number and the entrance code for the call. Thanks Hope to talk to you soon!!! Yes, I know it isn't Wednesday - sorry, I was under the weather and in bed most of yesterday.

Most of you know that Homer's Coffeehouse is sort of like my second office. When the walls start to move in on me, I escape to Homers and work there. A lot of work for HPS has happened at this little coffee house! Homers has a blog, and if you check it regularly, you can get free drink deals or extra punches on your Homer's card. I know some of my local friends would visit Homers - so check it out! http://homerscoffeehouseopks.blogspot.com/