How a Dog's Love Evolved Into a Charity for Kids Living With HIV

This World AIDS Day, as we continued to fight the COVID-19 pandemic, a historic gift from Fred Says — a Chicago-based charity founded by HIV-positive doctor Rob Garofalo — reminds us that there is another pandemic that requires our commitment. Named in honor of Dr. Garofalo’s dog Fred, the charity will give more than $200K in charitable donations to organizations in Chicago, across the U.S., and in other parts of the world that address the timely and specific needs of young people living with HIV. This year’s gift — by far the organization’s largest to date — announces Fred Says on the philanthropic world stage and honors the passing of Fred, who was integral in coping with Dr. Garofalo’s own HIV diagnosis 10 years ago.

“Fred may no longer be by my side, but what will follow in his memory is a movement he inspired,” says Garofalo. “A focus on supporting HIV-positive young people is essential to curb the spread of HIV and make the world a better place for future generations.”

Dr. Rob Garofalo is a pediatrician and the Head of the Division of Adolescent & Young Adult Medicine at Ann & Robert H. Lurie Children’s Hospital of Chicago. He is also a professor of Pediatrics at Northwestern University Fienberg School of Medicine where he is a national authority on LGBTQ+ health issues, adolescent sexuality, and HIV clinical care and prevention.

Dr. Garofalo was diagnosed with HIV in 2010. Despite his medical expertise and experience caring for those with HIV, it was a dog named Fred, who Garofalo adopted after his diagnosis, who proved indispensable to his survival. With Fred, he faced challenges imposed by his own HIV diagnosis that otherwise seemed elusive. The affect Fred’s unconditional love had on his own health led Dr. Garofalo to start Fred Says in 2013, a charity dedicated to ensuring HIV-positive youth receive the care, services, and support they deserve to lead healthy and productive lives.

“It’s a charity that is grounded in the spirit of unconditional love and in a specific ethos and commitment to youth living with HIV,” says Garofalo. “Within that rubric, there are infinite possibilities for giving.”

For the past 10 years, Fred Says has been a quiet, scrappy, and nimble funder and — much like its namesake, Fred — this small organization has had an oversized impact. To date, Fred Says has distributed more than $300,000 in direct support to nonprofit organizations throughout the country.

During this period, Fred Says has operated through mostly micro-donations via social media, or by leveraging local events such as the Ride for Life Chicago and a strategic partnership with the Stonewall Sports League in Chicago. Contributions to-date have been redistributed to organizations in Chicago and beyond that are committed to creating change in the lives of HIV-positive young people.

In 2020, the organization released When Dogs Heal, a book of essays and photographs capturing the stories of people living with HIV and the dogs that saved them. The anthology puts power back into the lived experiences of diverse HIV-positive people — depicting them as not survivors, but people living with HIV and thriving in large part due to the power of a dog’s unconditional love.

This year’s milestone donations come at a turning point for the small, family-run charity: Upon Fred’s passing, Fred Says received a generous contribution from a loyal friend and supporter that will help to expand the reach of Fred Says’ work. This charity and I have been touched by an angel twice in our lives,” said Garofalo. “The first angel was Fred himself and all that he has given not just me but the world. The second angel comes in the form of this generous donation, and the donations that follow, to make this year’s giving a reality.”

In celebration of Fred’s life, Fred Says is donating its largest amount to date ($205,000) to organizations across the nation and around the world including:

Howard Brown/Broadway Youth Center (Chicago) - $50,000

Test Positive Action Network (Chicago) - $50,000

Ann & Robert H. Lurie Children’s Hospital of Chicago - $25,000

Callen-Lorde Health Center (New York City) - $12,500

Children’s Hospital Los Angeles’ Adolescent HIV Program - $12,500

Children’s Hospital of Philadelphia Adolescent Initiative - $12,500

Birmingham AIDS Outreach (Birmingham, AL) - $12,500

Advocates for Youth (Washington, DC) -$10,000

Adolescent Initiatives at University of Ibadan (Nigeria) - $10,000

Desmond Tutu Foundation Youth Center (South Africa) - $10,000

Accompanying this year's monetary gifts will also be the distribution of 100 Fred plush toys to children at Lurie Children’s Hospital.

Each of these grantees have demonstrated a deep and lasting commitment to people living with HIV and will help carry on a 10-year legacy of giving inspired by Fred.

“Like many agencies, we’ve seen that youth living with HIV have been hit hardest by the COVID pandemic and have had the most difficulty accessing services. This gift from Fred Says will go a long way,” said Asa Radix MD, PhD, from Callen-Lorde Health Center in New York City. 

Marvin Belzer, MD, Director of the Division of Adolescent and Young Adult Medicine at Children’s Hospital Los Angeles, added: “The other day a formerly homeless adolescent patient — when asked whether there was anything else I could do to help — asked for help getting pots and pans for his kitchen. These basic yet magical gifts contribute so much to the lives of our young patients, and we are grateful Fred Says can support the kinds of requests that more traditional funding sources often cannot.”

These gifts mark a new period in the organization’s life. Fred Says is beginning the process of strategic planning and expanding its board of directors. These internal process developments will enable Fred Says to expand its ability to impact change and to become an “angel donor” in its own right for marginalized, HIV-positive young people throughout the world. “Support from Fred Says should help these young people not just survive, but thrive. That is what Fred would have wanted,” said Garofalo.

“Fred lives on in our hearts and in the lives of the young people he supports and touches. It is fitting that the charity is named after him in the simple present tense,” says Dr. Adedotun Adetunji, a physician at the University College Hospital in Ibadan, Nigeria.

Christopher Barrett Politan is principal of Get Give Grow, a philanthropic advisory organization.