Laura D’Anna, longtime volunteer and former Pulmonary Hypertension Association (PHA) Board of Trustees member, has been a member of the Sustainers Circle, PHA’s monthly giving society, since its inception in 2005. After her sister Rachel passed away from pulmonary hypertension (PH) in 1995, Laura became deeply committed to advocating for PH research and the PH community. Read her story to find out why she continues to give every month after all these years.
What is your connection to PH?
I first heard about PH in 1993 when my 23-year-old sister, Rachel Hoyt, was finally diagnosed after being misdiagnosed for years. Because her condition was advanced, she was not a candidate for lung transplantation, which was the only treatment at that time. Unfortunately, she became ill and developed pneumonia, which was mismanaged by providers who knew nothing about PH. Within seven days of developing this illness, she progressed from living a productive life as a student and a teacher to her untimely death in January 1995.
How did you learn about PHA?
In the early nineties, PHA started as the United Patient’s Association for Pulmonary Hypertension (UPAPH). I learned about UPAPH in my desperate attempt to find answers and resources for my sister. At the same time, I became linked with another PH patient, Gabrielle Miyara, through the University of California, Los Angeles patient support group that my sister was attending. Gabrielle started a small research foundation for primary PH (PHH) called the PPH Research Foundation in Southern California and I worked by her side for a few years raising money to support small research projects that were conducted within PH centers. When Gabrielle lost her battle to PH in 1999, I ended up merging our small research foundation with what had become known as PHA under the leadership and guidance of PHA’s Board Chair, Bonnie Dukart. This was a wonderful way for me to be able to recognize both Gabrielle and Rachel as PHA allowed funds to be used to name an investigator award in their names.
What are some of the different ways that you are involved with PHA and give back to the PH community?
The PHA Board of Trustees graciously allowed me to join the board and I am forever grateful for this decision. It allowed me to connect with others who had experienced a similar loss to mine, and it provided a way for me to do something constructive with the pain and emptiness that losing my sister had created. The board and community quickly became family, and I simply do not believe that healing would have been possible without PHA. I served on the Board of Trustees for about 18 years (before term limits and with breaks to have my children!). I continued to raise funds using an online platform and email campaign in partnership with Gabrielle’s family, and we were successful in funding another new investigator award in memory of Gabrielle and Rachel.
I know you are a member of PHA’s Legacy of Hope (PHA’s planned giving society). What made you decide to join the Legacy of Hope? Why do you feel like this commitment is important?
PHA is, without a doubt, the organizational affiliation that I am most proud of in my life. I am so fortunate to have been able to work with (and cry with) so many generous, wise, and loving members of the PH community. I want to be able to leave something behind when I am gone that makes a difference for others who are living with this incredibly challenging disease. I wish I could do more.
Why did you start giving to PHA monthly?
I love that this option is available! It happens without me needing to do anything and it establishes a baseline of giving that I can add to during the year as things come up. My parents are also Sustainers Circle members!
Why is this monthly commitment important to you?
Life can be very busy, and I really want PHA to always be factored into my giving priorities. This monthly option is an easy and efficient way to give.
What would you tell someone who is considering giving monthly to PHA or joining the Legacy of Hope?
PHA makes these two options extremely easy to do. Beyond the monetary support for all the good that PHA does, making the commitment to give in this way is a statement about how deeply one believes in PHA’s mission. It encourages others to do the same, it is a symbol of the unity in our community, and it allows the memories and the legacy of those whom we’ve lost to live on.