The White Ribbon Project gives new voice to Lung Cancer Awareness

By Amy Nicole Tangel

Lung cancer survivor, Heidi Nafman Onda said she has a goal to put a white ribbon in every lung cancer patient’s hands so they know they are never alone, and what started as a simple gesture to have a voice has taken life into a growing movement bringing new hope.

In October of 2018, Heidi was diagnosed with non-small cell lung cancer (NSCLC).  Initially, she received a phone call and was told with chemo and radiation she would have 4 to 6 months.  In a miraculous turn of events, when she met with her oncologist for the first time, he had a totally different story and she was told of a new trial immunotherapy specifically for her stage with, “curative intent.”  Three cycles of chemotherapy and thirty radiation treatments later, followed by immunotherapy infusions for one year, in January of 2020 Heidi received the report there was no evidence of disease. 

While Heidi did not have an active history of tobacco use and was educated about health, because of the lack of preventative screening for lung cancer she was not diagnosed until late stage.

“That’s our story here.  Anyone with lungs can get lung cancer,” she said.

Before The White Ribbon Project came to life, Heidi said she was working with all her might to advocate for better screening and for the public to become aware that anyone who has lungs can get lung cancer.  For a cancer that is the deadliest among all cancers, she said the stigma of smoking has taken a detrimental toll on the truth of lung cancer and what is being done for prevention.

When she and other advocates started asking care centers across the country what they were going to do for lung cancer awareness month in years past, Heidi said they were not only unsupported, they were dismissed.

“We were either getting ignored, or dismissed or down-right humiliated,” Heidi said.

One day, the hurtful responses and comments brought Heidi to a point where she said she felt she had to do something, somehow, even if it was just putting a white ribbon on her door.  She said nobody could tell her she couldn’t do that, so she asked her husband Pierre if he could make her a ribbon for the front door; Heidi said she was ready to scream to the world she had lung cancer.

“I didn’t have to ask permission from anybody to do this, and it gave me some control back in the process,” she said.

Heidi didn’t start with only putting a ribbon on the door though. She decorated the whole front of their house with tied white ribbons on trees and even the mailbox.  She said she took a picture of the scene and put it on a private Facebook page for advocates in Colorado.

From the picture, people started asking about the ribbon on the door and how they could get one.  What started out as one became dozens a week Heidi said, but because of the time of the pandemic they were just leaving the ribbons on the doorstep, and she never really got to meet many of the people who would share their pictures and stories on social media taking the ribbons out in the public, to landmarks and to their doctor appointments.

Pierre said it didn’t start out with the vision of a grass roots organization, but it just became more, and they kept getting signs from survivors and caretakers who also felt neglected and alone in some way on their own journeys.

“I think it was more responding to the needs of a community,” he said.

As Heidi and Pierre continued to network it became clear to them they needed to think more broadly and began connecting to other advocates all over the country like Liz Dagrossa from Bohemia, NY.  Liz was diagnosed with NSCLC at the age of 53 and 9 years later at the age of 62, Liz said she wakes up every day not thinking she is a patient with cancer.

For years, Liz said she has not only fought lung cancer, but the stigma that it is something she deserves.  The reality is that many people who are diagnosed with lung cancer have never actively used tobacco and even if they had; nobody should be treated like they deserve to be sick.

“Nobody deserves this.  I don’t care if you were a smoker or not,” she said.

Liz has been actively using her voice to bring awareness to lung cancer through social media and in her local community on Long Island for years.  Through her determination and persistence she joined the mission of The White Ribbon Project after seeing a Facebook post and reaching out to Heidi to see how she could get involved.  Most recently, Liz and her family started doing their own ribbon building distributing to others locally and she even brought her own treatment team at Memorial Sloan Kettering Cancer Center (MSK) on board in support.

“People don’t even know that the white ribbon stands for lung cancer,” she said.

Before living in Colorado, Heidi and Pierre lived in Los Angeles where she was a health educator with the HIV and Aids community and said the exact same stigma that happened to their community is what is happening to the lung cancer community.  Heidi said the fact that the mention of lung cancer automatically leads people to the question of smoking needs to end.

“We are going global now,” Heidi said.

“Ribbon Builds” are now taking place and people are gathering together to make the ribbons including patients, survivors, advocates, families and industry leaders, as well.  The feedback that Heidi and Pierre said they have received from countless clinicians who have begun to have discussions with them is that they have felt stigmatized as well not only for their patients, but by lack of funding to treat the disease.

“When you just focus on prevention then I think it ignores the fact that the public, doctors, we as a society have a responsibility for a better early detection, better treatment and for better outcomes,” Pierre said.

One of the biggest things Heidi said she would like to see stopped are the prevention commercials that show such horrible images.  She said chances are people who are eligible for screening who see those images are not being scared into screening, they are being scared away from ever wanting to know.

“They need to start showing images of hope, like Liz of 9 years. I’m 3 years and it was very tolerable treatment.  I never got sick.  I don’t know why, but that didn’t happen to me,” she said.

Impactful people like former NFL linebacker Chris Draft have made The White Ribbon Project a mission in their lives and Draft has become a national spokesperson for the organization having lost his wife to lung cancer. Industry leaders have also taken notice and met with Heidi in Colorado last month; building their own white ribbons to take with them to start their own missions.  Heidi said from that meeting alone, 20 countries have already been identified to begin using The White Ribbon Project as a template to educate and unite.

In addition to the support of industry leaders, the International Association for the Study of Lung Cancer (IASLC) has also shown a sign of forward movement and solidarity releasing a language guide to use a first-person language with specific focuses to “Eliminate Blame Language” and “End Stigma.”

When asked what her goal was for Lung Cancer Awareness Month and beyond, Heidi said it is to simply give a lot of love to those that support and continue to distribute as many ribbons as possible with the hopes of continued forward discussions and positive steps towards a cure.

“We are fighting for our lives and we are worth it.  We are worth demanding treatment like any other cancer,” she said.

For more information about how you can obtain a white ribbon, become involved or to learn more, visit www.thewhiteribbonproject.org or follow them on social media platforms Facebook and Instagram @thewhiteribbonproject.

Photos courtesy Heidi Nafman Onda & Liz Dagrossa

A Token of Luck within LI Garage Art

By Amy Nicole Tangel

In an age where repurposing the old into new has become not just a luxury, but a necessity from shortages in wood supplies, one LI craftsman has flipped the coin with one-of-a-kind restoration in his newly-opened sign shop.

Tom Cassanello opened LI Garage Art at Barntique Village in Moriches, NY, in the early summer of 2020.  With so much uncertainty for businesses during the height of the pandemic, Tom said he wasn’t even sure he wanted to entertain the idea in the very beginning and had resorted to just working out of his garage but when he looked at the space, the rest was history.

“I always did signs.  I did airbrushing a long time ago,” he said.

What started primarily as specializing in signs,  has now expanded to all types of custom furniture creations and refurbishes through Tom’s craftmanship.  Graphics, wood working, welding and most recently,  Tom has added leather working to his list of skills. 

A native of Huntington, Tom has lived the last 35 years in Rocky Point and is a Navy Veteran who served four years from 1975-1979.  Among fighter squadron Ghostriders and Tomcat, Tom’s service includes multiple deployments on USS America, which now rests on the ocean bottom and USS Eisenhower; one of the oldest still floating in service.

During his years of service Tom worked as an Aviation Metalsmith, but he said his main job was mostly painting F-14’s.

“When I got in the paint shop, we just stayed in the paint shop,” he said.

Following his time in the Navy, Tom worked in commercial diving, machine shop work and then as a cable splicer for 27 years until his retirement.  After Tom retired, he continued to follow his passion for building and painting and went to work for a sign shop but he said he felt it didn’t have the soul he was looking for working with vinyl and knew he wanted to focus on working with wood.

Over the years whenever a friend of his would open a shop, whether it be a tattoo shop, bike shop, junkyard or welding shop, Tom said he would make them a sign for their business as a token of good luck.

Time would go by Tom said, and businesses would evolve or run their course, but the signs would live on in their owners’ garages.  People would always say to him, ‘Hey, I still got your garage art,’ and with that Tom said the name LI Garage Art came to life.

Ever since Tom became part of the Barntique Village community he has been making signs for other vendor shops and said it’s like a little family there.  Over the years through word of mouth and from people who have visited, it is said that stepping into the village itself is like a rare step back in time.

All of Tom’s business likewise has come simply through word-of-mouth over the years and even though Tom said social media is not his forte, he does showcase his work on Facebook and the Marketplace and is working on building an Instagram platform.

LI Garage Art is open Friday through Monday leaving Tom with the days in between for building.  While most of the heavy work is done at his home garage workshop, if you come down to LI Garage Art, chances are you will find Tom in his seemingly ultimate man cave working on anything from painting to leather work or sharing stories with customers.

“It’s like a makers’ kind of place,” he said.

For LI Garage Art and every other shop in Barntique Village, they are only open in the daylight as there are no outdoor lights for evening shopping, but Tom said he is hoping to stay open some evenings during the holiday season.

Plans to decorate the village this year are in store for the holiday season with lights outside throughout, and Tom said he is looking forward to putting his artistic touches to work.  Keeping with the theme of antiques, Tom said he refurbished the village Santa and wants to create an original Christmas piece in the middle of the village with every shop’s name on display.

While other people who work with wood faced shortages and sky-high prices from the pandemic, for Tom he said he eliminated that problem when he decided to begin taking old furniture and repurposing the wood he already had just as was done in the past.

He said he always explains to his customers who want multiple pieces alike they are not all going to be exactly the same; each piece is handmade and one-of-a-kind.  Tom said he loves Long Island and making custom signs with the island engraved; still each island is just a little different.

“I love doing the nautical stuff,” he said.

Taking pictures all while he goes, Tom said, he doesn’t remember the first custom craft he ever made,  but his favorite one is always the one he just made.  Personal works of art are taken to heart with Tom who has made keepsakes for many veterans and in memory of those lost in service such as a custom sign which hangs at the Michael Murphy Museum in West Sayville, NY; honoring Navy SEAL LT Michael P. Murphy.

A craft Tom hasn’t tried his hands at yet and has his sights on learning next is working with stained glass but he said it’s a whole different thing.  Eventually, he said the shop will be set-up where each craft has its own station separated by woodworking, leather and glass.

Carving the wood is done at the home garage because it’s too messy for the village shop Tom said but  plenty of work is done right on-site where visitors of LI Garage Art can witness when they stop in.  Tom said he initially got into leather work from making leather oil cooler covers to replace the standard vinyl ones on motorcycles for himself and for other fellow riders.  He just kept thinking about it until one day he said he bought some old tools on Facebook Marketplace and started practicing different techniques.

“My stuff is a lot more primitive looking, because I want it to be,” he said.

As much as Tom said he loves talking with customers and working while he chats, he tries to avoid letting his customers see the work in progress and prefers to reveal the craft once it’s complete.  Aside from the element of surprise and capturing a moment, he said during the building process the work doesn’t look like what it’s going to be, “so it just makes sense.”

Shipping has been Tom’s biggest challenge for the business with costs and weights of items, but in spite of it all Tom said right how his work is in 17 states, and he most recently shipped his first piece internationally to France.  One piece at a time, Tom’s work is beginning to make its way around the world.

Looking to the future, Tom said he has so many things on deck he is never at a loss for inspiration or stories to tell.  Feeling grateful to just be busy and doing what he is doing, Tom is focused on making more custom creations and the ideal he learned early on of how important a sign is for a business opening.

“They get the rent, the furniture but when they get the sign, it becomes real,” he said.

To find out more about LI Garage Art, visit www.ligarageart.com or on Facebook @ligarageart.  For inquiries by phone, call Tom at 516-650-0500.