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Tom McGivney and Wife Maryann Are Making One Family’s Fight Against the Killer Disease of PKD

A few months ago, on September 15th, 2023, to be exact, Tom McGivney and his wife Maryann successfully climbed to the top of Mount Kilimanjaro in Tanzania, the highest mountain in Africa and the seventh tallest in the world. Now some people perform such an act simply for the challenge, testing their will and physical acumen.

And it was no easy task to climb Mount Kilimanjaro. As Tom recalled, “It took me years of training. The fact is, at the end of 2017, there was no way I could have done it. During diaconate formation and after ordination, I was not looking after myself. I had stopped exercising. By January of 2018, I was 240 pounds and I am only 5’10.” My physician, Dr. Benson. warned me that I was obese and pre-diabetic. She offered great guidance and advice, but it was Maryann who was my greatest example. I now weigh 165. Dr Benson helped me to understand nutrition and to begin exercising again gradually, so I wouldn’t hurt myself. Maryann was my inspiration because she always gets up at 5:30 a.m. for the gym and she always eats well.”

But in this case, the couple’s goal had a higher purpose rather than their personal health — it was to bring attention to polycystic kidney disease (PKD) which killed Tom’s great grandmother in her late 30s. It also took the lives of his grandfather and father — each at age 46 — and his brother Rusty at age 27. Even this report is proof that their effort has accomplished their goal.

The disease affects an estimated 12.5 million individuals worldwide. This inherited disorder of PKD causes clusters of cysts to develop primarily in one’s kidneys. Cysts are round sacs containing fluid and can cause kidneys to become enlarged. Ultimately their presence in the kidney can damage the organ, making it unable to function and often leading to death.

In addition to the climb, the couple launched a website to accept donations for a cure and to honor the family’s lost lives. Climbing to the top of Mount Kilimanjaro isn’t necessarily the easiest way to raise money, yet it definitely demonstrated the impact their losses has had not on this family but thousands of others.

As Tom explained, “This move was inspired by my brother Rusty who died of the disease. I used to play in a band with a song related to the mountain. Our band, Serious Pilgrim had a song called “Kilimanjaro.” Rusty and his friends used to come to our concerts and bounce along with that particular tune as I played the drums. It included the line, ‘Meet me at the top of Kilimanjaro.’ Now that Rusty is gone, Maryann and I decided to make the climb in his memory. Of course, I hope to reunite with him in heaven but first I’d like to raise funds to help find a cure here on earth.”

Fortunately for Tom, his wife Maryann has not only been his partner but his active supporter in this quest. They grew up in Staten Island, New York and met in high school 40 years ago in the summer of 1983. Maryann had just finished her freshman year and he had completed his junior year. They attended separate Catholic schools and were introduced by Kelly Weiss, their mutual best friend.As Tom added, “I’d only just started to play the drums and was finally emerging from the clinical depression that I suffered after my father’s death from PKD in 1980. It felt totally natural to be in love with Maryann and I’m grateful to have her for so many reasons, including her active support to help find a cure for such a terrible disease. Maryann met Rusty when he was just 11. In many ways, he was her little brother, too. He was my best friend. Losing Rusty at 27 was as hard as losing my dad. I didn’t know that an aneurysm could be a complication of PKD. We were blindsided.” 

Tom Maryann Maryann’s business travels also helped inspire the idea of climbing Mount Kilimanjaro. As Tom explained, “Maryann works for WTW (Willis Towers Watson), the third largest global insurance broker. She’s the North American Leader for the Healthcare Industry Vertical, responsible for all the healthcare business that the company places in North America. She leads a team of around 200 people. As you can tell, I’m proud of her. Maryann is easily the smartest person I know. She’s a wonderful spouse, a great mom and a great friend. I’m lucky to have a wife who’s always so encouraging — a great communicator and an avid listener. She has the patience of a saint, an energy level that amazes me, and she’s always putting everyone else first.” 

So far Tom hasn’t shown signs of the PKD disease. “The longer I go without it, the less my risk of getting it. Meanwhile, Maryann and I are determined to help others just as I wish my dad and Rusty could have been helped. My wife has a saying that’s helped so much when I’ve not been motivated. She says, ‘Sometimes you get the ‘W’ for the ‘went.’ Meaning that you may not feel like going. You may not feel like you accomplished anything in your exercise that day. But the cumulative effect of what you gave yourself daily matters because you went. Maryann was the inspiration that encouraged me to start walking again and eventually led me to running marathons. Without her example and encouragement, Kilimanjaro would not have been possible.”

In 1996, they moved from New York City and Tom entered diaconate formation in 2007. They now you live in Alpharetta, Georgia and he’s a Deacon in the church. “I was ordained by Archbishop Wilton Gregory in 2012. He’s now the Cardinal of Washington, DC. Of course, my religious faith has helped me deal with the repercussions of PKD and other losses. The root of diaconal vocation is to be an icon of Jesus, the suffering servant. As such, I minister to many families in distress. That can be in the form of handling marriage problems, addictions, mental illness and grief. I also spend a lot of time with senior citizens in assisted living. I visit the sick and those in prison. I journey with many in hospice care, as well. Although the disease has had an impact on my own family, my goal is to help find a cure for everyone on the planet.”
Maryann and Tom have three wonderful children. Twenty-eight-year old Jackie Kozusko is a special education teacher and married Shane Kozusko last year. Matthew, age 26, works for Johnson and Johnson as a medical device sales rep. He works in the OR with orthopedic surgeons and provides the equipment needed for sports-related surgical repair. Their youngest, 23 year old Katie is finishing her degree in Marine Sciences at Coastal Carolina. As Tom said, “These beautiful souls are part of my incentive to lead a healthy lifestyle and to help others.”

But ultimately their goal is to raise awareness in order to find a cure for PKD. Tom explained, “In 2000, just after Rusty died, we established the Richard E. “Rusty” McGivney Memorial Fund. This is administered by the NY Community Trust. We chose this vehicle because the funds would be managed and distributed in perpetuity.”
There have been many fundraising events in years since Rusty’s death like dinners with silent auctions and golf outings hosted by his best friends. Donations are placed in the fund and distributed by the Community Trust equally to the PKD Foundation and to Wagner College. But their efforts don’t end there. They have further plans to help find a cure for PKD.

Tom added, “I want to continue to raise money to find a cure because I don’t want anyone to feel what we have felt. As I think about the father and brother I’ve lost to this disease, I feel a sense of urgency to help protect others. Maryann and I are doing the Rim-to-Rim hike in the Grand Canyon next May. On a single day, we’ll hike 21 miles though the Grand Canton. We’ll descend 8,000 feet across seven miles on the South Kaibab trail to the river, continue five miles across “the box” and ascend 9,000 feet at a spot over nine miles up the North Kaibab trail. We’ll use that hike to raise more funds for the PKD Foundation. I’ll also run a marathon next spring and include that in the effort. Some of my injuries have interfered a little, but I try to run a marathon each year. My hope for the future is to do an Ironman and I’m looking to climb Denali in Alaska. But I have a lot of work to do before I can attempt either of those.”

In conclusion, Tom explained their further efforts. “Maryann and I give money to the fund every year at Christmas. Rusty’s Memorial Fund will give money in perpetuity to Wagner College and the PKD Foundation. I guess I just can’t stop giving Rusty a present for Christmas. Raising funds directly for the PKD Foundation this year was inspired because of Rusty’s connection to our song, ‘Kilimanjaro.’

“This was a dream trip to the mountain over 30 years in the making. As with all the great moments in our lives, Rusty is always present in our hearts. I know how much our climb would mean to him.”

For people to contribute, go to the link:

The 46th Denver Film Festival: The Stars in the Rockies

American Fiction

The 46th Denver Film Festival
returns this November 3-12 with a plethora of cinematic delights, creative conversations with award-winning filmmakers in attendance, and film events for Colorado. Held across multiple venues in the Denver area, The Denver Film Festival’s opening night film is American Fiction, directed by Cord Jefferson. American Fiction is Cord Jefferson's directorial debut, which confronts our culture’s obsession with reducing people to outrageous stereotypes.

Special presentations include Maxine’s Baby: The Tyler Perry Story, directed by Gelila Bekele and Armani Ortiz, which looks at the life of the actor, director, and media mogul. The Boy and the Heron, the latest film from Hayao Miyazaki, is a semi autobiographical fantasy about life, death, and creation, in tribute to friendship. The closing night film is I.S.S., directed by Gabriela Cowperthwaite. I.S.S. is an eerily prophetic high-stakes thriller set entirely in the confines of the International Space Station (ISS), where astronauts face a call to duty in a fateful and terrifying way. While tensions flare aboard the ISS, a worldwide conflict occurs on Earth, and the astronauts receive orders from the ground to take control of the station by any means necessary. Gabriela Cowperthwaite will be in attendance at the screening.

This is a small sampling of the many features, shorts, and documentaries being shown alongside meet-and-greets, parties, and brunches where you can mingle with the filmmakers.

To learn more, go to:

The 46th Denver Film Festival
November 3 - 12, 2023

Various venues in Denver, Colorado. 

Quite a Way to Spend the End of Summer — Basking in the Clear Air of Green Bay, Wisconsin

The end of August may be the dog days of summer for most. But for the cool folks in Green Bay, Wisconsin, the month closed out with five fantastic days of visiting our great north central state — one I had never visited before. By an odd quirk of circumstance and opportunity, I got to take it “all” in during a far-too-rushed first visit to this lush state of lakes and green up North.

Three of those days were full of mostly local artistic expression thanks to the efforts of Nate’s Home and Garden and MLC Scene Awards’ Freddy Moyano, a filmmaker and festival founder. Kicking off at 5:30 pm on Friday, August 25th, the inaugural Music Art Film Craft Fest took place in downtown Green Bay at the long-established Tarlton Theatre in the Broadway-Walnut Historic District. Formerly West Theater, West Pitcher Show, and Historic West Theatre, the building is a Streamline Moderne theater built around 1925. In 1999, it was listed on the National Register of Historic Places as a contributing property. For a visit to this area alone, with its outdoor market, little old-school burger joints, vintage havens and motel/hotels untrammeled by over-modernization, the trip was worth it. I basked in this retro-futurism where women in tats and piercings partied along side Packers fans.

A plethora of local artists, musicians, filmmakers and other talents showcased themselves and the scene once the doors open at the Tarlton. Performing that night were dream pop indie rockers The Pale Figures, classically trained cellist Arthur Gabriel Smeall and keyboardist Sam Bodhi. Also in attendance was local chef and sustainability advocate Selena Darrow who featured tastings of her locally sourced snacks during the evening.

Running from roughly six to midnight, the night was produced by MLC Awards and mental health advocacy group, Nate’s Home and Garden. Launched by members of the band Pale Figures — a group started in 2009 — it was revived once a family member had taken his own life after coping for years with having been a victim of clergy abuse. This event was a benefit for mental health and suicide awareness in association with a local prevention lifeline. Mental health advocacy has become a bi-partisan issue that concerns many people who passionately want to support it.

There was also some local fine art on display by Eric Cash — noted for his detailed portraits of the Beatles — and The Stain Glass Duo, whose artistic renderings are based on a local folk art stylizations. Jamie Bruhn of the Lizardz, a popular local rock band, was the MC throughout the evening. He has co-written and recorded three albums with The Lizardz including “Eyeblinder” in 2013. He has also worked with Blue Oyster Cult legend Donald “Buck Dharma” Roeser, one of his musical heroes as well as done “River to Nowhere” in 2018 and the latest, “Memoria.”

Various music videos were projected on the walls in a constant stream throughout the evening.

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And then the spotlight was on me. I debuted my live show — “Punk Portraits/Legendary Polaroids” — which detailed my experiences as a pop culture chronicler. Through an hour-long Q&A, talking about my images and interviews made during the late ’70s and ‘80s, I spoke of chatting with such stars as The Rolling Stones, Johnny Rotten and the Ramones. I got them and others to pose long enough to pull off that one perfect shot. 

The next day, Saturday, August 26th, the MLC Film Festival kicked off in the Waterford Room at the Irish-inspired St. Brendan’s Inn (234 S. Washington St, Green Bay, WI 54301). Organized and hosted by local personality Moyano, he has been holding the MLC Film Festival for several years. Last year, he had feted Green Bay native, veteran actor Tony Shaloub (“Monk” and “The Marvelous Mrs. Maisel”), and has awarded local luminaries in other years.

Q&As were held in between screenings of such films as the creepy “Desperate Souls” (dir. S.J. Hermann) and “Rise Again” (dir. Lauren Parker). During the lunch hour, I visited the local Farmers Market, tasted cheese curds and other local food fare. I saw The Pale Figures’ own film, “Mort Aux Lapins” and locally produced “Confessions of a Sailor” (dir. Kurt Krauss). The following day were more screenings of select movies from Canada, Mexico, Europe and beyond.

On Saturday, the MLC Film Festival hosted the premiere of Moyano’s own locally shot film, “Room 108” at the Neville Public Museum — an unusual combination of a historical society and natural history museum. Visiting there was worth the trip alone.

Then, before the MLC Scene Awards — which were scheduled for Sunday night — there was a sumptuous brunch at Chef Fusion, a fine dining downtown district restaurant on Broadway. Many selfies were taken and hands shaken as I bade my newfound fans goodbye. Then it was back to the cool ’50s styled Bay Motel (like the Bates Motel?) where I had stayed, to pack. I then took off for a three hour drive to Chicago’s O’Hare Airport and the flight home.

Oslo Freedom Forum Assembles Minds From Around the World in Norway

Held at Oslo Norway’s scenic Oslo Konserthus, the Oslo Freedom Forum brings together minds from around the world to further human freedoms. Running June 13 to the 15th, the Oslo Freedom Forum is a global conference series produced by the Human Rights Foundation (HRF) that brings together human rights advocates, journalists, artists, tech entrepreneurs, and world leaders to share their stories and brainstorm ways to expand freedom and unleash human potential across the globe. Originally the Freedom Forum began as a way to tell the stories of survivors of Nazi and Communist atrocities, but has since grown to encompass stories from around the world.

Special guests include New Yorker cartoonist Liza Donnelly, fashion designer Louise Xin, musician Manasseh Mathiang, and more. Panel discussions during the festival examine human trafficking, the women-led revolution happening in Iran, China’s use of AI, and the growing authoritarian regime from Russia and how it affects the world.

The theme of this year’s Freedom Forum is Celebrating Solidarity and honors the unity, mentorship, and community that HRF and our global community — from frontline dissidents to journalists, philanthropists, and technologists — have fostered in the last 15 years. While the event is being held in Oslo, Norway, all theater talks will be live streamed at and on their Twitter and YouTube pages so viewers abroad can hear incredible stories from human rights advocates.


To learn more, go to:

Oslo Freedom Forum
June 13 - 15, 2023

Oslo Konserthus
Munkedamsveien 14, 0115 Oslo, Norway

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