Our Stories
A Few Stories from ARA’s Research Volunteers, Staff and Board Members
Tammy – ARA Trial Participant

Being HIV positive made me realize how much more research still needed to be done – and I wanted to help that cause. Through the years I’ve been involved in a number of clinical studies for conditions such as lipodystrophy, the unhealthy fatty build-up caused by some of my medicine. That particular study helped me lose fifty pounds and gave my self-esteem a huge boost. I also heard about a pharmaceutical company looking for HIV+ models to appear in their ads. With encouragement from my friends, I auditioned, and was picked to be one of the models for their poster ads. It was empowering “coming out” as an HIV+ woman.
Today I am thirty-three years old, my T-cell count is great and my viral load is below fifty. I have a much more active life with my boyfriend and daughter and our dog compared to how I was living before AIDS Research Alliance gave me the tools and confidence to start living with HIV instead of waiting to die from AIDS.
This past summer my best friend “Sassy” passed away. I miss her a lot, but it would be so much harder to get through this loss if it weren’t for the growth in my life and the coping skills I’ve learned over the past ten years. I have a solid foundation in my life, a great partner and real friends. I have the courage and strength not to choose old behaviors in times of stress. I have a life today, and it is a good life.
Brian Glover - ARA Trial Participant
I am alive today because of medical research. I grew up in rural Pennsylvania on an isolated dairy farm. After graduating from high school in 1984, I moved to Pittsburg to attend Point Park College.
My father and stepmother were told of my diagnosis (without my consent), leading to being ostracized from my family. I was 19 years old, facing death with no family support. This was my welcome to adulthood. I realized I could be pessimistic and let the disease win, or I could be optimistic and face the disease head-on with every resource available to me. I joined a research project sponsored by the University of Pittsburgh hoping I’d get earlier access to information about treatment. Dodging that first doctor’s diagnosis, I was able to remain alive and healthy until 1999. My health declined then and I needed to start medication. In 2001, I was hospitalized in New York with bacterial pneumonia.
I got better. Medical research again kept me alive. After moving to Los Angeles, I enrolled in a six-month therapeutic vaccine study at AIDS Research Alliance. Volunteering as a trial patient at AIDS Research Alliance allowed me to help other people living with HIV/AIDS, and keep myself healthy as well.
We all can be a part of the progress toward better HIV treatments and eventually a cure. Because of research, I had treatment options. Because of research, I am still here. Because of research, I have had 23 years to pursue my dreams. Because of research, I have hope.
Rickalan Kerr - ARA Trial Participant

Like most people with HIV, Steve wanted two things: a cure and a way to keep HIV from hurting anyone else. I thought, ‘How could I help him? I’m a writer and even a blockbuster novel can’t cure AIDS!’ I’m grateful that ARA gave me a way to help. ARA was launching a new study of an experimental AIDS vaccine. I qualified and volunteered for the study.
Helping AIDS Research Alliance look for an HIV vaccine taught me some life-changing lessons. For one thing, I was surprised by people’s reaction to what I had done. I learned that mentioning HIV/AIDS still made a lot of good people nervous. And I was surprised that so many people think that AIDS is over – as if having some drugs on the market makes it all suddenly better. But AIDS is not over.
Michelle L. - ARA Trial Participant
My overall experience with HIV treatment has been an adventure, let's just say that. I used to get mad when I saw those mountain-climbing ads, but now I have climbed me some mountains! Read MoreThe work ARA is undertaking will forever change the horizons for many people far into the future – a future made brighter by their amazing and altruistic efforts. I’m personally indebted to ARA for my participation in a lipodystropy study that has improved my general health and well-being. I was happy to participate -- happy to be a part of advancing the science and searching for better medicines to help others battling HIV. It was a noble journey and I am thankful to have been allowed on it.
JohnPaul Valdez - ARA Trial Participant
If you’ve ever wondered if AIDS Research Alliance is making a significant difference, you can stop wondering. The work that ARA is undertaking will forever change the horizons of many people far into the future, a future made brighter by their amazing and altruistic efforts. Each member of the medical team is a hero to me. Read MoreI’m personally indebted to ARA for my participation in one of their studies that improved my general health and well-being. I was happy to participate, happy to be a part of advancing the science and searching for better medicines to help others battling HIV. It was a noble journey and I am thankful to have been allowed on it.
We all know that there are a number of snags we have to overcome to make the search for better HIV/AIDS treatments a successful venture. ARA is here – professional and competent – doing the day to day work needed to push medical research forward with a perfect and positive attitude.
This organization that has made an enormous difference to me, and to the many after me who will benefit from HIV research. I’m sincerely and profoundly grateful, more so than I am able to say with this note and these rudimentary tools called words. Everyone who wanders into ARA is incredibly lucky, and I thank the folks who support this work.
I sometimes cry when I realize how fortunate I have been. These tears of happiness, no matter how painful some past memories, offer hope in the face of despair. I am a witness to the bona fide miracle that is medicine.
Dr. Gilda Frantz - ARA Circle of Hope donor
My son Carl was a handsome, extremely intelligent man of unusual integrity and kindness. In 1986, Carl called me from Los Angeles. Read More“Mom,” he said, “I have that terrible disease. Dr. Agre sent me to take a test because I’ve been feeling so weak, and the test came back positive! I have that disease!” He said it was like a death sentence.
Carl, and all the neighbors, began to hear whispers about a new disease in the gay community. A tsunami of fear began to spread in the gay community, and into my son’s and my life as well. He lived in fear. I lived in dread. We both felt isolated in our secrecy without the support of friends or family. So began the long and horrible years of my son’s physical decline, and eventual death in 1992.
Chris E. – ARA Trial Participant

Natalie F. – ARA Volunteer
I have to work with my daughter to make her take her meds. It was so hard: "Oh God, she's throwing up and I have to make her take these pills!" But you know what? At age 12, she fought with her doctor about her pill burden! She did! She walked into his office and she said, "I am taking too many pills! You find me a study and get me into it now so I can take less pills!" And he did – the treatment study proved very helpful.Habiba Ismail – Education Outreach Specialist

we witnessed a growing increase in the number of clients attending sessions. Clients kept their appointments, shared their progress with group members, and were in good spirits. It was fascinating to see how a small group of individuals who shared a common condition of living with HIV became a close-knit extended family.
My experience with this group serves as a reminder of the importance of delivering a message of hope. In my work my clients were able to better utilize the tools made available to them.I continue to use these lessons working as a community educator at AIDS Research Alliance. Though I cover different information in my presentations now – for example, sharing information about microbicides or access to clinical trials – I carry with me the idea that active engagement and true empowerment will help our clients cope better with this disease. Through compassion, hope, and education, I’m able to see the impact on individual lives.
Dr. Emery Chang – Associate Medical Director

I also saw – particularly during my four years of Internal (Adult) Medicine & Pediatrics training at Tulane University in New Orleans – how poverty, poor health education and the lack of community resources devastate young lives, especially those of young African-American men and women, and how government inaction has made a bad situation much worse.
Unlike hospitals in wealthier cities like New York where new HIV medications and wide use of testing programs had alleviated the need for dedicated HIV wards, Charity Hospital and Medical Center of Louisiana was one of the few hospitals in the country that still had a dedicated 22-bed HIV/AIDS care unit. The unit was often full with dozens of patients waiting for a bed, while the outpatient clinics struggled with thousands of HIV patients. The system, already stretched to its limits, was destroyed when Hurricane Katrina struck. Charity Hospital now functions at a small fraction of its capacity, its AIDS unit never reopened and many of the remaining patients continue to suffer from local, state and federal incompetence and neglect.In comparison, I volunteered with the International Committee on Equal Healthcare Access and the Clinton Foundation last year to mentor physicians and nurses in rural Rwanda. I was amazed at how far this poor African country has come in its HIV care in spite of many hurdles. With very limited resources, there is an extensive free HIV testing program throughout the country, a network of HIV clinics providing medication and care, and strong governmental support for HIV education.
In the past decade, we have seen significant advances in the treatment of HIV. Individuals are living longer, enjoying a better quality of life, and are planning for retirement. But there is still much work to be done globally. We are losing the battle on the HIV prevention and education front, as record numbers of minority youth become infected. Federal funding for research and patient services are tight. Current prospects for a preventative HIV vaccine and a cure are still a long way off. As we enter our third decade of HIV/AIDS, let us celebrate the advances that have been made and renew our commitment to fight this pandemic.
Cary Stevens – Chairman, Board of Directors and Circle of Hope Donor

From my role in that event, it was a natural leap to broader support of the organization. Throughout my involvement, I’ve seen how this small organization has a large impact on the way HIV research is being conducted. Having suffered the loss of a number of friends to AIDS, I appreciate how important it is to advance the scientific understanding of HIV. I’m honored that I have been chosen to lead AIDS Research Alliance at such an important time, and to help the organization achieve its full potential.
Allen “Buddy” Green, MD - Member, Scientific Advisory Committee
I’m a family physician who specializes in ‘Integrative Medicine,’ which combines conventional western medicine with alternative and complementary therapies. I was attracted to AIDS Research Alliance because of its willingness to explore a wide range of treatment options for HIV/AIDS – from state-of-the-art bioengineering to mining the data of centuries-old traditions. Even though ARA has been involved in the research of natural and phytochemicals for many years, I saw that I could bring my own experience with natural medicine to bear in advising the agency’s first-rate scientific team.
David Hope Michod – Legacy of Hope Donor

After an early retirement, he returned to Australia, which served as home base for his extensive travel. David passed away in 2005 from melanoma cancer. David truly believed in the mission of AIDS Research Alliance. At his passing, he bequeathed $642,000 to AIDS Research Alliance, the second largest single gift in ARA history.
Close friend and retired ARA board member, Chuck Williams, remembers David as a true internationalist and gentleman. David’s passion for life was expressed through his love of travel, sailing and a thirst for knowledge of other cultures. It was that passion that inspired his incredible generosity to AIDS Research Alliance. He believed in finding the root cause of a problem, and that is precisely what AIDS Research Alliance is doing by finding medical solutions to the AIDS crisis. David Michod leaves behind an enduring story of hope in the search for a cure to AIDS.
Morris Fox – Legacy of Hope Donor

Monica and Phil Rosenthal – Circle of Hope Donors

There’s no worse feeling than ineffectuality. When we see a problem that can be solved, we feel an obligation to fix it. By joining with AIDS Research Alliance, there was an opportunity to take part in research, which directly helps … it is a real solution.
“To whom much is given, much is expected” sums up the philanthropic expectations we’ve set. We expose (our children) Ben and Lily, on a daily basis, to the organizations we support. By participating in fundraising activities together, and teaching them to tithe a portion of their allowance for charitable causes, inspired philanthropy and service have become a part of our everyday dialogue.
We [all] have a responsibility to repair the world.