Category: DebRA.org

Summer Update

It seems that the dog days of summer are here and with heat indexes around 110º I could stand for some cooling considering one of our AC units is in need of some service.  On the health front, I think I have seen the Doctor more this summer for everything from an upper respiratory infection, severe jaw pain, to back troubles.  All of these ailments have kept me off the bike and out of the gym far more than I wanted.  Hopefully that will change with some cooler weather and some therapy on my back.

On the photography front, June was the busy month with the Tour De Cure charity bike ride and the DebRA.org patient care conference.  This conference is a regular event for me every other year for the past six years.  This year was a little different as I was requested to shoot several eb patients during some of their day to day activities that are normally carried out in privacy.  At some point these images should be compiled into a Debra.org brochure for eb awareness and fund raising.  For those that are not familiar with eb, CNN has done a recent report on the use of bone marrow transplants to lessen the impact of the disease.

At the slightest friction, Jake's skin would shed, leaving the newborn wailing in pain. When Jake rubbed his eye, a chunk of his eyelid would come off in his fingers. He was born with recessive dystrophic epidermolysis bullosa, a terminal genetic condition in which persistent skin problems lead to crippling deformities and, eventually, skin cancer.  –Source: CNN

On the paddle board front, travels for work and my aching back are keeping me off the water.  I did pick up a paddle that converts from a standup paddle to kayak paddle from boatstogo.com that is reasonably light for an aluminum shafted paddle.

On the blogging front, the WordPress theme has been updated to Suffusion and I have my own images rotating through the header.  Given the small sliver of the image that gets displayed, some are pretty abstract.  I am also trying out the Lazyest Gallery for a quick photo gallery.  Currently I have copies of my favorites from timbrown.us (which need updating) on the photography page as a test.

Weekend Recap

Couple of photo shoots kept me busy all day Saturday.  The first shoot was the 2nd annual 5k "Run for Our Heroes" sponsored by the Raleigh Police Officers Memorial Foundation.  They doubled the number of participants this year and had some awesome weather.  The photos are available at http://performancepixel.com/runforourheroes2010. 

The second shoot of the day was the North Carolina Epidermolysis Bullosa (EB) Support group in Rockingham.   I have to say this not so much of a shoot as it was meeting for me to attend and see old friends and meet some new families who share this disease.  The photos are on timbrown.us in the dEBra folder.  The password is the name of the eb mascot.  After the EB meeting, we stopped and had dinner with some friends in Sanford.

 

On Sunday we managed get in a bike ride and missed the rain clouds, but got a little bit more of a workout due to the wind.  My new wheel set from Performance did well and at some point I will write a short review.  Now back to the regularly scheduled grind.

Time to Catch My Breath

Since my last entry, I have entertained my wife’s relatives from Michigan, attended the Martinsville Sprint Cup Nascar race, spent the week in San Antonio, attended the North Carolina EB support group get together in Emerald Isle, and managed to get to the State Fair today for lunch and a review of the photography competition/exhibition.  After the fair, I mounted my new GPS enabled bike computer and uploaded the images from the support group event to the web gallery.  The password for photos access is the name of the city where this year’s patient care conference was held.  Back to work tomorrow; with a fund raiser ride scheduled for the morning of the 1st and a wedding to shoot that afternoon.

Great Weekend at PCC

All in all things went well at this year’s Debra Patient Care Conference.  Many of the kids had grown so much in two years.  It’s amazing.  I met a lot of wonderful families and I plan on being at the next PCC in two years.  The photos from this year’s conference are in the Debra Album.  Please feel free to make comments or e-mail questions about downloading the full size image or how to grab a smaller one for e-mailing.  The password to access the album is the name of the city where the conference was held.

Quick Update

I am headed out tomorrow to photograph the DebRA kids at the Patient Care Conference.  The DebRA photo albums have a new password.  It is the city name where the conference is being held this year.

My diet and exercise is still going well.  I am holding at about 23 lbs. lost.  An interesting study by Dr. Dean Ornish is shedding some light on the ability of the body to turn genes on and off when lifestyle changes are made and monitored.  For more on the lifestyle changes used in the study check out the http://www.ornishspectrum.com/ web site.

Don’t let your wife sign you up for the Susan G. Komen Walk for the Cure unless you check to make sure she did not sign you up for the "Women’s Recreational" walk.  Nothing like being the only guy in the midst of 10,000 women walkers and having all the cheering people yelling "Go Ladies" the whole route.  The worst part was not realizing what she had done to me until the finish line of the 5K.

Saturday Ride

I rode almost 8 miles this morning on my road bike. I found I don’t like the Crank Bros Candy pedals. Getting out of them is fine, but clipping in is too hard. I really need to check into some real road clips and shoes as I also had some arch tenderness. All in all it was pretty good ride. At one point I ended up behind a ride group of about 10 guys that looked like they averaged 25mph. I hung with them for about a ¾ of a mile, while they were warming up. 🙂 I talked to one guy at a stop light, where I broke off, and he was impressed with my bike. My average speed was 12.3 and I had a max speed of 33mph. I think my cadence was like 86. I am not sure what all that means, but I can tell my cycling classes at the gym are making a big difference in how I ride this year. Now I am off to shoot the Debra.org NC kids at our support group meeting. Then more shooting at the Miracle League games this afternoon.

Recent Shooting

Today I shot Baby Cadence baby Cadence again for her 3 1/2 month portrait. The lighting was very straight forward with a simple set up using a translucent umbrella in front of 300WS strobe. Tonight I set up my whole light kit at a friend’s church to test out how they could shoot their members for a pictorial directory. I did not shoot any with my camera so I don’t have any samples, but the shots they were getting with their Canon Rebel Xti were very good. I think the hardest thing for them, apart from building the actual directory in a desktop publishing tool, will be framing the families the same every time to eliminate the need to edit the image file beyond cropping and resizing to get the desired printer output. I received a call from debra.org this week asking me to shoot their patient care conference in June and the Mats Wilander Golf and Tennis Celebrity event this October at the Westchester Country Club. This is a great opportunity for me to give something back to these families that give so much when they have a child with EB.

Ken Paves’ Big Give & EB news

I am not sure if any of you watch Oprah! or the Big Give, but on O’s show on Monday there was a short feature about the efforts of hairstylist Ken Paves to raise money for medical research for Epidermolysis Bullosa (EB). Last week a celebrity party was held at Eva Longoria’s new restaurant, Beso. After finally getting a chance to replay Ken’s portion of the show tonight, I saw Rachel. A girl Ken befriended several years ago who has EB. I met Rachel almost two years ago at the Nashville EB Patient Care Conference where I made portraits of many of the patients at the conference. Understandably Rachel was not in the mood for a photo shoot that day, but I managed to get a decent shot of Rachel with her mom. While I have a very mild form of EB, I can never expect to know the impact the disease has on the patients and families with severe forms. If you are so inclined, please help Ken take his efforts and those of his Hollywood friends to the next level by donating or bidding on some of the items that just went on auction.

On the EB treatment front, doctors in Minnesota are using stem cells in an attempt to correct the disease by performing a bone marrow transplant using marrow from a sibling without EB and giving it to the EB sibling. It will be interesting to see if this treatment is successful. In mice with EB the results are promising.

Happy New Year 2008!

At the risk of rambling, I will take a try at recapping some recent events and other happenings. As far as photography goes, I have been shooting some pregnancy portraits. Some traditional and some of the Demi Moore variety. It seems each mother to be has a different opinion about what they want in a portrait. I have been pleased with the results from both the traditional and the more revealing poses. I am still not efficient at getting what I shoot onto paper in the from of photographic prints. Thankfully the portrait sessions I have shot have ended with me handing over a copyright release and CD or DVD of the images for customer to print. I did try out the Epson 7800 at my local Sam’s Club this weekend to print some 20″x30″ portraits of the DebRA.org kids. Considering the price for each print was less than $11.00, I can’t Continue reading “Happy New Year 2008!”

Photo Labs

The folks at debra.org selected eight portraits to be printed for their offices in NYC. I gathered some pricing locally for the 20″X30″ mounted prints and asked a couple of large print houses in the city for pricing as well. The large print houses were more than double local pricing. I have asked AS Photo Lab for pricing so we will see if I have to ship what I can get locally or if these folks could print, mount and deliver since they are only a few blocks away from the debra offices. To see the prints debra selected, check out the first eight images in this gallery.