Life isn’t easy. Just ask Jose Ramon, a 54-year-old Parkchester resident who was diagnosed with ALS in January of this year. Amyotrophic lateral sclerosis, or ALS, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. The condition is often called Lou Gehrig’s disease, after the baseball player who was diagnosed with it.

On Saturday, July 25, as part of a wider fundraising initiative spearheaded by the ALS Association, Greater New York Chapter,  Ramon, supported by a group of friends and supporters completed a “Walk from Home” around Parkchester Fountain to fundraise and raise awareness about the condition. Participants were encouraged to host their own “mini-walks” from wherever they called home, to engage family, friends, and neighbors in a fun and safe way, and to design the Walk from Home route to fit their team’s needs.

Ramos had been a door control specialist for 24 years when, during a five year period he lost everything, including his health, house and car, all while also coping with a series of personal bereavements. He was diagnosed with PTSD and depression shortly afterwards, and later with ALS.

In order to create a therapeutic outlet for himself, Ramos took up photography and created The White Shirt Project (TWSP), a series of black and white photographs and first-person narratives mainly of people from The Bronx, the LGBT community and its allies. Some of the models photographed as part of the exhibit have struggled with mental health issues, while other participants in the project have been supportive of such struggles.

According to Ramon, TWSP aims to attach a face to the stigma of mental illness, and allows the viewer to get closer to the human beings behind the portraits and stories. Each model wears a white shirt which is used as a catalyst to provoke dialogue and stir emotions leading (hopefully) to catharsis while also transforming the individual’s own experience with mental health from that person to the community.

“As a Bronx native photographer, I’m always concerned about aesthetics and how others interpret what I do,” Ramon said at the launch of the exhibit. “Until now, I have not found a particular [photo] style I could fully commit myself to even though I enjoy many. I am evolving and focusing on projects that are more personal to me. A catalyst was needed to evoke and transmit a range of emotions and thoughts that are not constricted or limited to specific notions, interpretations, or mindsets. Henceforth, The White Shirt Project was born.”

Ramos said that PTSD and depression make it hard to devote time and care to his own afflictions. Even after the ALS diagnosis, he said it was much easier to smile, shoot some photos, and walk away without too much involvement or commitment. “The thought of engaging in any type of dialogue without my camera was not an option since photography had become my only means of visceral, creative expression,” he said.

“I can say that I’ve come to terms of fully accepting myself,” he added. “On my good and special days, I put on a white shirt. It immediately becomes the identifier that I’m not only clear but also present. The white shirt gives me a new, positive demeanor. Wearing a white shirt empowers me. Wearing a white shirt reminds me of death and rebirth – however polar that may seem.”

Due to the physical challenges which the ALS condition presents, it was always going to be tough to cover any physical distance but Ramos was determined to participate in the event. Supported by his family and friends, he achieved his goal and duly completed the walk around the fountain in Parkchester on July 25.

In 2019, The Greater New York Chapter of the ALS Association hosted seven Walks throughout New York and New Jersey. Each year, over 15,000 people including ALS patients, families, friends and corporate leaders join together to raise funds in support of the Chapter’s cutting-edge research and community-based patient services programs.

The association released a post on Facebook after this year’s event to thank all those who participated, saying, “The Greater New York Chapter would like to thank all who participated in the “New York City Walk From Home to Defeat ALS” this past Saturday! Fantastic job to all our fundraisers, together you have raised $169,123! Thank you for all the incredible support, and for sharing your photos throughout the day. We look forward to Walking with you again in 2021!”

Following the July 25th Walk, Ramon thanked his friends and supporters. “The support that I have received from my community, friends and chosen family on the day of the ALS walk was undoubtedly the most emotional so far,” he said. “I’m very thankful and overwhelmed with the amount of love, and display of humanity as we push through our daily struggles.”

Ramon is currently writing a book, “before anything else happens”.

Anyone wishing to donate to support those with ALS can still do so by clicking on the following link.

Editor’s Note: We were saddened to hear on March 14, 2021 of the passing of photographer, artist and activist, Jose Ramon. We offer our deepest condolences to his family and friends, including Norwood News photographer, Miriam Quiñones. May he rest in peace.

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Welcome to the Norwood News, a bi-weekly community newspaper that primarily serves the northwest Bronx communities of Norwood, Bedford Park, Fordham and University Heights. Through our Breaking Bronx blog, we focus on news and information for those neighborhoods, but aim to cover as much Bronx-related news as possible. Founded in 1988 by Mosholu Preservation Corporation, a not-for-profit affiliate of Montefiore Medical Center, the Norwood News began as a monthly and grew to a bi-weekly in 1994. In September 2003 the paper expanded to cover University Heights and now covers all the neighborhoods of Community District 7. The Norwood News exists to foster communication among citizens and organizations and to be a tool for neighborhood development efforts. The Norwood News runs the Bronx Youth Journalism Heard, a journalism training program for Bronx high school students. As you navigate this website, please let us know if you discover any glitches or if you have any suggestions. We’d love to hear from you. You can send e-mails to norwoodnews@norwoodnews.org or call us anytime (718) 324-4998.