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AIDS Monument Newsletter – 2021 Q2

Remember. Celebrate. Educate.


Message from the Board Chair

On Thursday, April 29, 2021, FAM hosted an update on Zoom with dozens of our donors, from $500 to $500,000. We showed the progress we are making with the physical Monument, reviewed the design of the physical Monument, and shared our on-going work on the digital Monument of audio stories, interviews and other programming.

Sharon Stone reminded us that the Monument “will last beyond our lifetimes and leave a mark so that … people we have lost and loved will be remembered, and we will be remembered for the struggle and strife, and … this world we have changed.”

As Sharon says: “Let’s do our very best to leave this AIDS memorial for those who come after us – they will know the friendship, the camaraderie, the dignity and love we have all shared and the family we have become during this terrible crisis.”

If you would like to view the event, which lasts just under 34 minutes and includes two emotional stories from FAM’s HEAR our STORIES audio recordings project, please click on the link below.

Feel free to share this update with your friends, employers and colleagues who might want to learn about STORIES: The AIDS Monument and to support us with a donation.

Warmest regards,

Irwin M. Rappaport


Watch the video.


UPCOMING EVENTS

Celebrity reading of The Normal Heart

This Saturday!
The Normal Heart virtual event

It’s the hottest virtual event this weekend — a celebrity reading of Larry Kramer’s The Normal Heart — and your ticket purchase can support STORIES: The AIDS Monument.

FAM is proud to be a Community Partner for ONE Archives’ star-studded virtual reading of The Normal Heart on Saturday, May 8 at 5:00 p.m. (Pacific).

Please join us for this one-time streaming live performance, followed by a Q+A with the Director Paris Barclay and all-star diverse cast.

This will be the first time the Tony Award-winning play features a predominately BIPOC (Black/ Indigenous/People of Color) and LGBTQ cast.

“Through today’s lens, the story of a marginalized people pushed to activism by the onslaught of an epidemic clearly was worth telling again. We’ve assembled an extraordinary cast that makes this particular reading even more timely. And we hope, more powerful,” Barclay said.

Cast members include Sterling K. Brown (This Is Us, Black Panther); Laverne Cox (Orange Is The New Black, Promising Young Woman); Jeremy Pope (Hollywood, Choir Boy); Vincent Rodriguez III (Crazy Ex-Girlfriend, Insatiable): Guillermo Díaz (Scandal, Weeds); Jake Borelli (Grey’s Anatomy, The Thing About Harry); Ryan O’Connell (Special, Will & Grace); Daniel Newman (Walking Dead, Homeland); Jay Hayden (The Catch, The House Bunny); and Danielle Savre (Station 19, Heroes).

IMPORTANT: When you purchase your ticket, please use the code ONEFAM so that proceeds will help support STORIES: The AIDS Monument.

Buy Tickets.

Once you have purchased your ticket, you will receive a reminder email the day of the event.

If you have any issues logging on to the event platform, please text Jennifer at 202-340-0179.

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Hamilton at The Pantages Theatre

Hamilton at the Pantages Theatre

Hamilton, winner of eleven Tony Awards, is returning to the Pantages Theatre this fall, and FAM invites you to join us at a show-and-reception event on the evening of Friday, November 19, 2021.

What better way to get back to theatre-going and support The AIDS Monument with your ticket purchase for this must-see theater event?

This evening-to-remember will include a pre-show reception at the W Hollywood at 7:00 p.m. followed by the 8:00 p.m. show across the street at the historic Pantages.

FAM has secured premium seating for the performance, and you can select from VIP or Premium VIP choices.

Buy Tickets.

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Other Ways to Support STORIES: The AIDS Monument …

… and be the first to find out about our special events:

  • Like our Facebook page! https://www.facebook.com/TheAIDSMonument
  • Follow us on Twitter (@TheAIDSMonument) and Instagram (theaidsmonument)

Get a signed copy of Sharon's Book!

Get Your Personally Autographed Copy

Make a donation to FAM in the amount of $500 or more before May 15, and you’ll receive an autographed hard-cover copy, addressed personally to you, of Sharon Stone’s new best-seller The Beauty of Living Twice.

Click here to make your contribution through the secure donation page on FAM’s website.


Park Area Prepared for AIDS Monument

Construction Update: The contractor hired by the City of West Hollywood to oversee the extensive renovation of West Hollywood Park has begun grading and preparing the site for The AIDS Monument.


STORIES from Artists: Tim Murphy

With every newsletter, FAM will shine a light on an artist who is grappling with HIV/AIDS in their work. We’ll be asking the same questions, and getting very different answers. For the first interview in our STORIES From Artists series, we’re featuring the author and journalist Tim Murphy.

Among other achievements, Murphy is the author of the novel Christodora, which profoundly moved us. Published by Grove Press in 2016 and longlisted for the Andrew Carnegie Medal, Christodora tells the story of a diverse cast of characters – including an AIDS activist – whose lives collide in an iconic building in Manhattan. Murphy has also reported on HIV/AIDS for 20 years for such publications as POZ Magazine, where he was an editor and staff writer.

– Abdi Nazemian
Board Member, Foundation for the AIDS Monument

– When is the first time you heard about HIV/AIDS?

My first AIDS memory is browsing the magazines in the CVS in my hometown in Massachusetts and seeing a story that I think was in Newsweek or Time — this was probably 1982 or 1983, so I would’ve been 12 or 13 — about AIDS, and the story had a picture of an AIDS awareness or safe sex poster hanging in a gay bathhouse, which was a double peek for me: of not just AIDS, but of gay life and gay sexual spaces.

And then my next memory is of Rock Hudson on the cover of People magazine in October 1985 after he died. I remember going to the adjacent small city on the regional transit bus to buy black oxford shoes at the Army-Navy store and seeing the magazine cover on the way there. But this was a long way away from when I would actually acknowledge that I was gay myself and come out, which was not until the early 90s, at the end of college.

Why did you choose to grapple with HIV/AIDS in your work?

I have written about AIDS in NYC since about 1994, when I became a volunteer writer for GMHC’s various magazines, back when they probably had 1,000 volunteers at any given time.  And after writing about HIV treatment for about 7 years, I became HIV+ myself in 2000, in a very messy period of depression and drugs.

So, HIV/AIDS has been part of my personal, social and professional story my entire adult life in NYC, and eventually it all found its way into Christodora. At that time, there were basically no fictional narratives that took on the whole arc of AIDS in NYC, from 1981 until well into the cocktail era, and I wanted to try to do that, but jumping back and forth in time.

– In what ways have the arts adequately — or inadequately — honored the legacy of those we lost and those who fought?

AIDS as depicted in film, TV and lit has usually been the stories of gay white men, even as recently as “It’s a Sin” on HBO, and we have not really had good storytelling depicting AIDS in Black communities, among drug users, and among women.

Maybe someone will option Sarah Schulman’s forthcoming “Let the Record Show,” which is the first forthcoming history of ACT UP-NY from all those perspectives, not just gay white male ones. The story of the activism that was done in those realms, such as legalizing needle exchange in NYC or making the federal government broaden the definition of AIDS to include women’s symptoms, is really fascinating — great stories we haven’t heard before. I hope we see more of them well depicted in TV and film especially. TV in recent years really has become an incredible medium for telling these never-before-told stories.

What scared you most about telling this story?

I think being so graphic about sex and out-of-control drug use, which was definitely part of my story. I thought people would recoil from those aspects, but in fact they seem to have had a car-accident, can’t-look-away quality for most readers. I was also scared about telling AIDS stories not from my “native” community middle-class gay mostly (but far from all) white men, such as women’s stories. I approached that part with a lot of thoughtfulness and extreme respect around historical and medical accuracy. 

What is your favorite work of art that deals with HIV/AIDS?

I love a short story by a writer who died of AIDS in the 90s named Allen Barnett, called “The Times As it Knows Us,” in a collection called The Body and Its Dangers and Other Stories. It’s an incredibly beautiful piece of writing that was hugely influential for me when I read it in my 20s in the ’90s. I also think that the TV show Pose deals with AIDS really beautifully, as did the TV show The Deuce. And I love Janet Jackson’s “Together Again,” which is her valentine song to her friends who died of AIDS.

–  What do you think the role of art is during a public health crisis?

I think art, seeing the stories we are living, or have lived, helps us process things emotionally that we otherwise might not be able to process, because it reflects them back to us in a way that’s concentrated and distilled, versus the slow drip of real life, which can just be slowly traumatic. 

If you could help shine a light on one life we lost to HIV/AIDS, who would it be?

The designer Willi Smith, who died of AIDS in 1987. I wore WilliWear in high school, so I have a sentimental attachment, but whenever I look at old pictures of him and his models in his clothes in NYC in the 1980s, I just feel happy and thrilled and wish I could watch the story of his short life in a limited series or something.

I feel the same way about the fashion illustrator Antonio Lopez, who also died of AIDS in 1987. Maybe a dual bio of both of them? I imagine they crossed paths, working in the same city in the same field at the exact same time. 


Remembering Ivy Bottini: 1926-2021

By West Hollywood Councilmember John Erickson

West Hollywood lost a hero when Ivy Bottini passed away on February 25, 2021. Ivy’s life was the very definition of activism. After moving to Los Angeles in 1971, Ivy jumped into the gay and lesbian rights movement, where she co-founded the Coalition for Human Rights, AIDS Network LA, and AIDS Project Los Angeles (now APLA Health).

Her prominence in defending and advancing LGBTQ rights was first seen when she served as the Southern California deputy director of No on 6, the campaign created to defeat the Briggs Initiative. The Briggs Initiative (Proposition 6) was a referendum on the California state ballot in the 1978 election that was sponsored by John Briggs, a conservative politican from Orange County. The failed initiative sought to ban gays and lesbians from working in California’s public schools.

In 1986, following the success of No on 6, Ivy chaired the No on the LaRouche Initiative (Proposition 64) campaign.  Activists associated with conspiracy theorist Lyndon LaRouche formed the “Prevent AIDS Now Initiative Committee” (PANIC) to place Proposition 64 on the 1986 state ballot.  Prop. 64 would have added AIDS to the list of communicable diseases, a step toward the LaRouche camp’s goal of quarantining HIV-positive people. The measure was defeated by a margin of 71% to 29%.

Ivy also served on the City’s Lesbian and Gay Advisory Board (LGAB) and it was here where she first advanced the idea of a monument to memorialize the lives lost to AIDS and to commemorate the people dedicated to the care of people living with HIV/AIDS.  At that time, other members of the community with a similar idea got together with Ivy and her dear friend Ruth Tittle, and that group laid the groundwork for what would become the Foundation for the AIDS Monument.

Bottini’s life and activism had a significant impact on so many individuals, whether they knew it or not.  Like so many people, I met Ivy when I first moved to the City of West Hollywood.  Ivy’s presence was unmatched at any city meeting or event and like the proverbial godfather, if you wanted to be a community activist, you needed to first get her blessing. 

Ivy loved working with people and helping them realize and hone their passions.  This was my story, like so many individuals before me, with her.  As a male feminist and a member of the National Organization for Women (NOW), I had heard and known of Ivy’s impact and work.  From designing the logo that NOW still uses to this day to the expulsion from the NOW’s leadership by then President Betty Friedan because Ivy started a public dialog about lesbians in the feminist movement (“the lesbian menace”), Ivy was an icon in every sense of the word.

However, to me, Ivy was always just the friend and mentor that I could call with any problem or issue I had.  While I’d like to think of my experience as unique, it is no surprise that Ivy played this role for so many and, as a result, she changed countless lives and communities for the better. 

Ivy’s death at the age of 94 reminds us all that no matter what age you are, you can have an impact and make a difference for so many individuals.  The life and times of Ivy Bottini prove that one woman can change the world and, even in the process, inspire a young gay man from Ripon, Wisconsin to run (and win) a seat on the West Hollywood City Council. 

 Because of Ivy, so many of us remained safe and alive in our communities when our governments and families turned on us.  Because of Ivy, we found that home may not be where we were born or raised but in a place called West Hollywood. 

John Erickson is a City of West Hollywood Councilmember and a Council Liaison to the Foundation for the AIDS Monument.


Four decades of HIV Research Allows
Faster Response to COVID Pandemic

By W. David Hardy, M.D.

Ever wonder how and why we had diagnostic tests to accurately confirm COVID-19 cases only two to three weeks after discovery of the SARS-CoV-2, the virus that causes it? How were treatments like remdesivir or the “antibody cocktails” developed for treatment of this new disease in a few months rather than the usual 10 to 15 years? How could over 200 new vaccines to protect persons from COVID-19 proceed to human testing within a few weeks after discovery of the new disease, with 6 now available for global use?

In large part, all of these tremendously rapid, effective and safe health advances were only made possible due to the many scientific advances made by our four decades of HIV research.

We now take for granted the highly accurate, specific and rapid laboratory technique called PCR (polymerase chain reaction) which underpins our most useful HIV blood test called the “viral load test.”

In 1996, this test allowed HIV researchers to see “below the surface” and finally understand that untreated HIV infection is never dormant, but instead continuously and ferociously active and destructive. PCR technology was rapidly applied to detecting and measuring the amount of SARS-CoV-2 in an infected person’s saliva.

This happened within days of the virus’ discovery and was fashioned into multiple, highly accurate diagnostic tests with a few weeks. Thanks to this lightning-fast development, our ability to diagnose persons with COVID-19, confirm the virus’ transmission patterns and trace personal contacts of possibly infected persons became almost instantly possible.

PCR is also used to determine the effectiveness of new therapies for COVID-19. Without this tool, literally millions of more persons would have become infected and succumbed to this disease. The fact that PCR was already used to diagnose and treat HIV and many other viruses, streamlined its use for COVID-19.

The therapeutic technologies designed to treat HIV (e.g., Truvada© and Descovy©, used to both treat and prevent HIV) were quickly leveraged to exploit basic vulnerabilities shared by HIV and SARS-CoV-2.

This transfer of technology led to development and FDA approval of the first antiviral medication, remdesivir, for COVID-19. When used early in the course of COVID-19, it helps affected persons to recover faster and leave the hospital earlier than persons who received a placebo treatment.

The almost magical monoclonal “antibody cocktails” quickly lower the SARS-CoV-2 viral load in an infected person’s body and kept them from progressing to the point where hospital care was needed. These antibodies have also been highly effective in protecting high-risk residents of nursing homes from the viral infection when given to them after exposure to the virus. 

This therapeutic technology was first discovered and developed as treatment for and protection against HIV over 15 years ago. The years of knowledge and clinical experience gained from studies of these anti-HIV antibodies allowed design and production of similar “antibody cocktails” for COVID-19 in a matter of weeks.

Finally, almost everyone in our world has been awed at how fast multiple preventive vaccines have been designed, developed and now used to protect persons from COVID-19. A developmental timeline which historically took 10 or more years was necessarily and successfully compressed into a few months.

While we still lack an effective vaccine to protect persons from HIV, it is not for lack of trying. Ever since HIV was discovered in 1983, scientists have conducted thousands of laboratory experiments, hundreds of animal studies and clinical trials testing possible vaccine strategies.

The laboratory technology, results from animal and human safety and effectiveness studies, developed over almost four decades of HIV vaccine research, paved a clear and relatively simple pathway for developing safe and effective COVIC-19 vaccines.

Here again, years of HIV vaccine research directly fostered COVID-19 vaccines.

In a related manner, the federally funded, highly experienced clinical trial networks originally created to test HIV treatment and prevention strategies were re-purposed almost overnight to recruit, enroll and evaluate thousands of volunteers for many COVID-19 clinical trials.

Without these well-oiled and highly effective networks of experienced clinical researchers, the unprecedented, rapid and high-quality clinical trials of COVID-19 vaccines could not have been accomplished in such record time.

All-in-all, as inadequate and delayed as the United States’ overall public health response to the COVID-19 pandemic was, the pre-existing, extraordinarily high level of technology, research advances and clinical trial expertise derived from our response to the HIV global pandemic allowed our scientific and medical response to the COVID-19 pandemic to flourish and produce life-saving results in record time.

Without the multitude of “lessons learned” over the last 40+ years from responding to HIV, the death and destruction due to SARS-CoV-2 would have been much greater and even more tragic.  Thus, we see how our response to the HIV pandemic has changed and improved our world today.            

Dr. W. David Hardy is a Board Member of the Foundation for The AIDS Monument.  He has worked as an HIV Researcher since 1984 and as a COVID-19 Researcher since 2020.


SPOTLIGHT:
Ruth Tittle, Loyd Tittle & Capitol Drugs

By Irwin M. Rappaport

Ruth Tittle was a founding Board member for the Foundation for the AIDS Monument, and served as Board Secretary for many years. She also served for many years as a board member and officer of the West Hollywood Chamber of Commerce.

In 2017, Ruth received a Rainbow Key Award from the City of West Hollywood. The award was given in recognition of her 16 years of services to the Lesbian and Gay Advisory Board, her work in support of Gay and Lesbian Elder Housing, her service as a board member of the Foundation for The AIDS Monument, her work with her late brother Loyd Tittle as pioneers in affordable prescription services at their pharmacy Capitol Drugs, and for bringing much-needed attention to addiction, mental health, lesbian visibility, preservation of LGBT history, women’s health, and many other aspects and aspirations of the Gay and Lesbian community.

Capitol Drugs Opens

Ruth’s late brother Loyd came to Los Angeles in 1978.  In 1986, Loyd purchased a pharmacy called Capitol Drugs, in Sherman Oaks.  It was a homeopathic pharmacy.  Among other things, Loyd helped customers with supplements that would aid them in recovery from drug and alcohol addiction, based on his own experience as a recovering alcoholic.

In 1990, Loyd opened the West Hollywood location of Capitol Drugs at 8578 Santa Monica Boulevard near the 24 Hour Fitness gym and across the street from the Ramada Plaza hotel.  The business expanded in 1991 to include the Power Zone next door to the pharmacy, offering supplements and a juice bar with smoothies and protein shakes.

Holistic and Personal Approach

Much of the success of Capitol Drugs and Power Zone was due to the way Loyd (and, later on, Ruth) and their staff (including VPs Robert Frydrych and Bruce Senesac) cared for their customers.

Ruth explains: “We knew their spouses, their doctors — each customer was treated like someone you knew and cared about.  We took a holistic approach, caring for the whole person.”

By the early 1990s, AIDS was the leading cause of death among Americans ages 25 to 44 and had hit Los Angeles particularly hard.   AZT was a single-drug treatment which wasn’t effective when the virus began to mutate, and many people couldn’t tolerate the side effects such as extreme nausea.  Often, people stopped taking it because it left them no quality of life.

Organizations such as Being Alive and AIDS Project Los Angeles (APLA) worked with Capitol Drugs to get the latest information to their customers about experimental treatments.  They organized lectures in Power Zone and Capitol Drugs where doctors would talk about the latest experimental treatment options.  People would try anything they’d heard might work.  They would try garlic enemas, which made the pharmacy smell like an Italian restaurant. Loyd and Ruth grew kombucha mushrooms in a refrigerator and offered Chinese herbs.  

Customers would come into the pharmacy and looked like they might not live more than a few days.  This was the case with John Duran three different times, according to Ruth, but fortunately he pulled through!  Ten friends from Chicago including Loyd moved to Los Angeles together but only 3-4 survived.

In the early ’90s, Ruth and Loyd would go to four or five memorials a week.  Ruth estimates that she lost over 400 friends, customers and employees to AIDS.

Caring for Loyd

Loyd was diagnosed with AIDS in 1988.  For four years, Ruth frequently traveled from Lexington, Kentucky to Los Angeles to help care for Loyd, using accrued sick time and paid leave from her government job as a civil engineer.

In 1992, Ruth moved full-time to West Hollywood to care for Loyd and to help him with the businesses.  Loyd suffered from cytomegalovirus (CMV) colitis, and as a result he couldn’t absorb nutrition.  As with many people with AIDS, this condition led to loss of body mass, commonly known as “wasting.”

Loyd was in the hospital 11 times in his last year.  Dealing with insurance companies was a difficult challenge.  People didn’t want to lose health insurance coverage, or not be able to get coverage, if the insurer found out he or she had HIV/AIDS.

Ruth wanted Loyd’s insurer to approve paying for a home health care worker, but the insurer denied the request.   She learned how to fight with the insurance companies as part of caring for Loyd.   With advice from APLA, Ruth finally convinced the insurer to cover home health care because it was much cheaper than the cost of a hospital stay.

As Loyd lay close to death in his apartment, one of his close friends, Steven Bair, came to say goodbye.  Steven kneeled down and whispered into Loyd’s ear, “I’ll see you soon.”

Steven died a year later.  The last words Loyd said to his sister were:  “Ruth take care of the stores, and I love you.”

Loyd died March 6, 1993, at 42 years old.

“One of the things my brother said is that ‘I don’t want people to forget me.’ And that breaks your heart to hear somebody say that.”

A plaque remembering Loyd is on the sidewalk in front of Capitol Drugs, part of the AIDS Memorial Walk.  To deal with the grief from the death of her brother and soulmate, Ruth joined the LA Physicians on AIDS Forum and jumped into work running the pharmacies.  She created and promoted the West Hollywood Health Fair (held in March and October of each year, except for the current hiatus due to the COVID-19 pandemic).

The Health Fair is an opportunity for local health-conscious businesses to work together and for residents to get healthy and support such businesses.  The most recent Health Fair featured more than 70 vendors and attracted more than 2,000 attendees.  Later, Ruth became one of the founding members of the Board of the Foundation for The AIDS Monument.

Fear and Discrimination

Drug cocktails (protease inhibitors) finally became available in 1995, and they were a life-saver, a complete game-changer in the treatment of people with AIDS.  But in the beginning, Ruth recalls, there was one mail-order company shipping out the medication for the whole country, and the pharmacy had to send them patient information.

Patients were afraid of losing their jobs or housing if their employer or landlord found out they had AIDS.  The company promised that it would send out the medication in a plain brown package directly to the patient, but that didn’t happen — it was marked as being from a pharmacy.  It would arrive at workplaces and get left in hallways.  The controversy and concern led to a push for patient privacy which ultimately helped bring about the federal law, HIPPA.

The Origins of the AIDS Monument Project  

In 2011, Ruth had been on LGAB (Lesbian & Gay Advisory Board, City of West Hollywood) for 12 years, along with Ivy Bottini who had then served on the advisory board for 11 years.  Each year, LGAB would pick its top three issues they wanted to work on, but for a number of years, the idea of an AIDS monument didn’t make it into LGAB’s top three.

Ruth wanted to keep pushing the City of West Hollywood to do a monument.  Ruth recalls people saying “We don’t have a cure yet.  You’re wanting to build a memorial, but we still need to help people.” 

And Ruth thought, “If we don’t do it now, look how long it’s been since all these people died.  How long do they have to wait before something is done in remembrance of them?”

“So many times,” Ruth recalls sprinkling ashes “off the coast, because they had nowhere to go, they needed cremation to be paid for, they had … no one to call, no family to come to them … Those are the unspoken, un-memorialized, unmarked graves, unrecognized, that we need to honor, for them.”

So, she and Ivy went in to speak to West Hollywood City Councilmember John Duran, who had appointed Ruth to LGAB.  Duran said that the City didn’t have the money at the time to build a monument, but Duran mentioned that there were some guys in the community [Craig Dougherty, Jason Kennedy, Conor Gaughan and Hank Stratton] who had been talking about trying to raise money for an AIDS memorial, so he introduced the two women to the three men.  [Craig Dougherty wrote a position paper proposing an AIDS monument in 2010, and met with Duran that year]. 

Ruth, Ivy and some of the guys met at West Hollywood City Hall.  Ivy started working on another project, but Ruth kept working with Craig, Jason, Hank and Conor.

Ruth had worked with Mark Lehman on the Gay and Lesbian Elder Housing project, so she contacted Mark and asked if he was interested in working on the AIDS memorial (now called the AIDS monument) project. Mark jumped at the idea, and a group of them met at Joey’s Café and hit it off.  After that, the Board was formed and started to grow. 

At a health fair at the Grove where Ruth volunteered a number of years ago, she spoke with a man who said his brother died of AIDS.  The man didn’t know his brother was sick and he wished he had done something to help his brother.

Ruth told him: “We are building a place where you’ll be able to go anytime you want, and you’ll be able to talk to your brother.”

He said,” I’ll keep watching and when that happens, I’ll be there.”

Ruth sold Capitol Drugs and Power Zone in 2016, thirty years after Loyd opened the first pharmacy location.  She currently resides once again in Lexington, KY, near her daughter and grandchildren.

At 70 years old, Ruth hasn’t slowed down.  She and her youngest granddaughter already have plans to go to the Dominican Republic to swim with humpback whales during migration season in the spring of 2022.


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