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