Angelo Sciulli: Giving ALS One Big Shiner

November 3, 2004

Nearly seven years since learning he had a rare form of ALS —primary lateral sclerosis — Angelo Sciulli, someone “Rocky Balboa” would be proud of, is still going strong.

The indefatigable Sciulli never goes down for the count, tries to prevent others with ALS from doing so, and is as passionate as ever about “eliminating the disease from the face of the Earth.”

He’s made quite a name for himself as a wildlife and nature photographer, is mad as hell about ALS and is not going to take it anymore. This means stepping in the ring against the disease 24/7.

ALS chose the wrong guy to bully. If anything it’s the other way around. A personification of determination, Sciulli has gone so far as to even attempt arranging a meeting with President Bush to discuss stem cell research. He’s quick to point out, however, that he could not maintain the momentum and positive attitude without his wife for 37 years, Janet, who he calls a “saint.”

His emphatic messages to people with ALS are subliminally conveyed through the beautiful images he takes of wildlife and nature, and motivational writings. The overall themes are stand tall, get involved and never give up.

These days, Sciulli’s life revolves around being the best husband, dad, granddad, photographer, writer, and most importantly, ALS advocate possible. He works closely with The ALS Association’s Jim “Catfish” Hunter chapter serving the Carolinas.

The reason he became involved with ALSA all boils down to the basics. 

© Barbara Bradley Angelo Sciulliwith Carolina Panthers player Mike Minter.

“I was impressed with the executive directors in the Carolinas and the Rocky Mountain chapters,” recalled Sciulli. “Both had a sincere interest in making a difference in people with ALS and I felt we could work together to fight the disease. I also found it easier to get answers to ALS questions through the executive directors.”

Sciulli is hardly all fire and brimstone. Anecdotes about the ravages of ALS are peppered with wry, witty observations that are funny and comforting to all. For instance, ask him what he’s up to these days and he replies, “Six-feet, 243 pounds, but why do you ask?” or when asked what his age is, “Let’s just say in dog years, I’m dead.”

His days as a black belt in karate, football and hockey player, and in the armed forces have helped toughen up the 57-year-old for his battles with ALS.         

Sciulli proved the prognosticators wrong long ago. He beat the odds.   

The doctors told the former director of chemical research for Spring Industries, a home furnishing company, that he would not survive for more than four years. That was in 1998, one year after he embarked on a second career as a professional photographer. And here he is, still basking in his 15 minutes, more like 30 minutes, of fame. 

“When I was diagnosed with ALS I was upset initially. My photography gave me a reason to get up and do ‘stuff.’ The only difference was that ALS changed my focus to writing solely for ALS and disability awareness.

“After seeing first-hand the devastation of the disease, my determination was reinforced. I just lost a 35-year-old friend who battled ALS for five years.” 

Sciulli’s photos have appeared in numerous publications and have been chosen for exhibits, including the National Press Club and the International Photography Hall of Fame and Museum. He downplays personal glory and prefers shining the spotlight on the potential of all ALS patients.

“Each of us has a different talent and each of us can use those talents to the fullest,” he pointed out. “Not everyone can be a pro athlete but that doesn’t mean we cannot play recreationally. People can go and travel just like I do and take photographs. Because they don’t publish and write doesn’t mean they do not experience the same natural beauty as I do.”

© Mike Owens Angelo Sciulli autographs a book for U.S. Congressman John Spratt who supported and participated in the Walk To D’Feet ALS®.

“When I am set up, it doesn’t take any longer to compose and shoot,” explained Sciulli. “My difficulty is getting to where I want to shoot safely. Once there, I can do whatever I want by myself. Incidentally, if you look at my photos, you cannot tell I have ALS.”

Sciulli believes in letting his photos do the talking, after all, a photo is worth a thousand words. These stunningly serene, focused images of creatures and their environment have helped raise awareness of ALS and motivate other ALS patients to not throw in the towel, seek their own adventures and appreciate the natural wonders surrounding them.

“I use my photography to attract people to the ‘words’ I write to raise awareness for ALS and disabilities. Incidentally, each photo is a momentary capture of what I saw in that moment of time. Each photo stands on its own merit and none is a statement by itself.”

Sciulli’s photos instantly mesmerize. A beetle on a leaf, a blooming flower, a magnificent sunset, cascading waterfall, giant buffalo, elk, cheetah, whale or glistening lake, and thousands of others, take on a life of their own, inviting more scrutiny and rendering everything else of secondary importance.

Contributing to the majesty of many of Sciulli’s photos is complementary gentle, thoughtful prose that reflects upon ALS and/or his personal battle with the disease. Making the insights even more profound are dollops of humor, a staple of the Angelo Sciulli persona.

Here’s an example of Sciulli at his tongue-in-cheek best: “I cannot out run a rock. Bear photography is very dangerous and should a bear charge, I simply spray all of my retreating associates with spray cheese. I call the technique “leveling the playing field.” 

Even at home, non-humans occupy a special place in his life. He has three dogs ranging in age from 7 months to 13 years old, including two German Shepherds and a mix. Two of the dogs were rescued from the pound. There’s also a backyard filled with rabbits, opossum, lizards, tree frogs, birds, hawks, owls, squirrels, deer, assorted bugs including butterflies and dragonflies.

He cuts to the chase when explaining the difference between animals and humans. “Animals are animals and hence predictable depending upon the species,” he said. “Animals only live in the present and do not worry about the future. There is only now.” 

In the last few years, Sciulli has logged almost 90,000 miles on Northwest Airlines, flying to such locales as Italy, Ecuador, Kenya, Canada and many U.S. states, all in the name of pursuing the perfect photo and increasing awareness of ALS.  

When not globetrotting —he may travel to Italy and Arizona this winter — he’s donating his book and DVD, “Challenging Nature Photography,” to ALS fundraisers, coordinating the book’s travel exhibit, making presentations on ALS, participating in ALS workshops, or be found helping the Carolina’s chapter and ALS patients.  

© Mike Owens (L-R, Front Row) Standing beside Angelo Sciulli is his grandson, Christopher with a friend, long-time ALS patient, Bob Phillips, and Helen Hunter, widow of Jim "Catfish" Hunter for whom the Chapter is named. (L-R, Second Row) Beth Smith, facilitator of the local ALS Support Group, Janet Sciulli, and Frankie Phillips, wife of Bob.

“I check in with some of the closer patients by e-mail,” said Sciulli. “I do get to tell tall tales and assorted lies at the quarterly ALS clinics. I find that they have a lot of questions about treatment, disease progression, where to get services, etc. After living with this disease for six years, nearly seven, I guess I have acquired a lot of knowledge and the patients know that I understand the questions. I am also quite willing to tell them I will give them a swift little kick to you know where if they get down and don’t do something about it.”   

Each section of “Challenging Nature Photography,” which the Midwest Book Review called “exceptionally well written and very highly recommended reading,” describes a photography trip he made after the diagnosis and details the mental, physical and spiritual challenges he faced pursuing his passion.

Sciulli’s love affair with wildlife and nature photography dates back to1960 when he visited Yellowstone National Park with a Boy Scout troop.

“Have you ever had a hobby that you could immerse yourself in and forget the world around you? Sciulli asked. “Or perhaps you read a book that was so interesting that you became so absorbed in that you forgot about time? When I go to ‘work’ with my camera, time ceases to exist for me. I can be exhausted after a day of shooting yet completely rejuvenated.” 

The executive director of the Carolina ’s chapter, Jerry Dawson, has become good friends with Sciulli, who, in the last two years, has participated in the Lancaster Walk To D’Feet ALS®, an event where he raised nearly $3,000, ALS Awareness Night at the Charlotte Knights Baseball, numerous other awareness events, book signings, and many more activities.

“Angelo’s strength and courage is such an inspiration to everyone,” said Dawson. “He has proven that despite the effects of ALS, he is determined to press forward and live life to the fullest.

“He works so hard to support others living with ALS, not to mention other worthwhile causes like his recent campaign to send toys to the children in Iraq.”