A Picture’s Worth…

April 17, 2013

How do you determine the value of a photograph? It’s a question photographers deal with every day when pricing their prints and services. On this day, however, I see the question very differently.

Today…

Three years ago today I lost my brother Rich to ALS, better known as Lou Gehrig’s disease. Not a day goes by that I don’t think of him.

When The Past Becomes A Present

Sometimes — even for a photographer — our most valuable photos aren’t the prints that have sold the most, or the ones that have won awards or been featured in magazines. Instead, they are captured moments destined to mean so much more. Like a 12-year old big brother sharing his 7-year old sister’s delight as she falls in love with a baby goat at the Catskill Game Farm. How I loved that day — and that Rich was part of it.

Brother and sister at the Catskill Game Farm in 1965.

Catskill Game Farm, 1965

Looking Back…

I look at that photo now and all of the wonderful feelings from that day come flooding back. It was such a fun time. I look at Rich’s face and see the kindness that followed him into adulthood. I look at a very young me in jeans and a red jacket sitting in the dirt with a smile on my face and see the first signs of the photographer I would later become.

I look at both of us together and see innocence, happiness and pure joy. More than anything else, I see a captured moment in time that now means the world to me. Much more than either one of us ever could have possibly imagined.

So with a bittersweet smile, I can easily tell you the value of this photo…

Priceless.

~ Liz Mackney

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At Home in the ALS House

September 2, 2011

The future is now for 10 people living with ALS at this state-of-the-art residence overlooking Boston harbor.

Leonard Florence Center for Living

The Leonard Florence Center for Living is a state-of-the-art long-term care facility that’s currently the only Green House in the nation with a residence designed specifically for people with ALS. The ALS residence is named for landscape architect Steve Saling, who has ALS and contributed to the design and construction of the building.

To learn more about this fantastic facility and the inspiring man who helped to make it a reality, click here for the rest of the article.

It is one year ago today that we lost Rich. Not a day goes by that he is not in our collective thoughts. I know that I speak for many when I say, “I love and miss you Rich. You’re in my heart today and always.”

Until we meet again…
Liz

MDA has awarded 10 grants totaling nearly $3.5 million to fund research projects focused on uncovering the causes of and developing therapies for ALS.

The new grants went to investigators at labs in the United States, Canada and Israel.

MDA’s Board of Directors met in Los Angeles July 16, where it reviewed and approved the new grants based on recommendations from the Association’s Scientific and Medical Advisory Committees (SAC and MAC). Grants are scored and recommended for approval based on the capabilities of the applicant, the scientific merit of the project, and the proposal’s relevance to developing treatments for the diseases in MDA’s program. The effective start date for the grants was July 1, 2010.

Click here to read the entire article.

With the holidays just around the corner and air travel likely for many families, now is the opportune time for people with disabilities to carefully plan their sojourns.

Learn from others

“Traveling with a disability is not easy, but with some extra preplanning and research, it is completely doable, and well worth it,” says Mike Bougher, 46, of Benicia, Calif., who received an ALS diagnosis in 1998.

In the travel tips section of his website, Bougher addresses air travel with a power wheelchair or ventilator, and even discusses “Wheelchairs in the Rainforests.”

Bougher provides comprehensive details about his travel preparations. For example, he and his wife Jen have wheelchair disassembly down to a fine art for commercial air travel. For the benefit of baggage handlers, the couple’s preparations include attaching two brightly colored laminated signs showing how to set and release the chair’s brakes.

Others with ALS have recounted their travel experiences, both good and bad, and how they made the experience more bearable, on Flyer Talk Forums/ALS Travel Advice. There you’ll find practical advice, such as to bring a blanket and extra socks to keep a person with ALS warm while flying. Noted one contributor, “[The] most important thing to remember is to help preserve his dignity. ALS is a disease of the body, not the mind.”

Click here to read the entire article.

All I Know*

When the singer’s gone
Let the song go on
It’s a fine line between the darkness and the dawn
They say in the darkest night
There’s a light beyond

But the ending always comes at last
Endings always come too fast
They come too fast, but they pass too slow
I love you, and that’s all I know

For Rich With Love

* Lyrics by Jimmy Webb / Vocals Art Garfunkel

The next ALS TDI Webinar will tackle the topic of familial ALS. This specific form of the disease is inherited between generations. During this hour-long discussion led by Drs. Steve Perrin and Fernando Vieira you will hear about the role of genetics in disease, how that information is used to develop crucial preclinical screening models, as well as current clinical trials specifically aimed at fALS.

Sign-Up Here to Register for the FALS Webinar on September 21 at 4:00PM (EDT)

Steve Saling talks about being lucky and as happy as he has ever been, which might seem odd, given that Saling cannot speak, walk, or move his hands.

Saling was diagnosed with Lou Gehrig’s disease four years ago, a month after the birth of his son. Instead of despairing, he went into overdrive, determined to use technology to stay one step ahead of the relentless and usually lethal disease. Now he is blazing a path for many others.

Through a chance encounter shortly after his diagnosis, he teamed up with Barry Berman, chief executive of the Chelsea Jewish Foundation, and helped to design the nation’s first residence for ALS patients needing nursing care. Using customized infrared technology, patients have far more independence than in a typical nursing home.

Saling, who once specialized in making public parks accessible for disabled people, is its first resident.

The Leonard Florence Center for Living’s Steve Saling Residence officially opened yesterday in Chelsea. Tiny infrared transmitters in the ceilings connect to a master computer in the basement. This allows its residents to use small computers on their wheelchairs to summon an elevator, open and close doors, turn lights, televisions, and DVDs on and off, control the heat and air conditioning, even order meals from the cafe downstairs.

“My whole life has perfectly prepared me to be right where I am today,’’ Saling wrote in an introduction for the opening of the 10-bedroom residence. “I was a very good landscape architect and I am proud of my professional achievements, but my most important work will be done after I got ALS.’’

With a mischievous smile, Saling recently demonstrated his masterpiece.

Click here for the entire article.

ALS diagnosis for ex-Patriots player; NFL considers aid.

Kevin Turner was strumming his guitar about 18 months ago when the fingers of his left hand suddenly stopped listening to him. Maybe it’s arthritis creeping in, thought the former New England Patriots fullback, or lingering effects from many a football injury.

“I was telling them, make a G chord,’’ he said, “and they wouldn’t move.’’

Turner, known on the gridiron for his punishing blocking, had been shrugging off growing weakness in his hand, but now he couldn’t ignore it. He had surgery to fix the neck injury that ended his career, thinking that may have caused the hand problem. But there was no improvement, and the weakness spread to his right arm.

Testing recently brought a stunning diagnosis: amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

The 41-year-old Alabama native is the 14th former National Football League player known to be diagnosed with the often-fatal and incurable nerve disorder since 1960. That’s a rate eight times higher than the rest of the adult male population.

So many former players have been diagnosed with ALS that the NFL is considering whether to provide benefits to help with their care, league spokesman Greg Aiello told the Globe yesterday.

Click here to read the entire article.

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