Candi Bleifer

as told by Laura D'Anna

On February 11th, 2009, PHA lost one of its tireless champions when Candi Bleifer’s courageous 12-year battle with pulmonary hypertension unexpectedly ended.

It is impossible to succinctly describe the various intellectual and monetary contributions that Candi made to PHA, which, during a pivotal moment in the organization's history, literally ensured the organization's strategic direction and sustenance. Although it may sound simplistic, I believe it is accurate and appropriate to say that PHA would not be the healthy, impactful organization it is today without Candi Bleifer.

My hope in writing this is to highlight a few of Candi’s contributions that touched me personally, while trusting that each person who knew her has a story of his or her own. I had the pleasure of serving on the Board of Trustees with Candi for over six years. During that time, she held various positions including both Vice President and Secretary of the Board of Trustees, and Chair of the Governance Committee. Simultaneously, she served on other committees such as the Strategic Planning and Personnel Committees.

In these various leadership roles, there were several things about Candi that always impressed me. First, she was sharp-witted about all matters of business pertaining to PHA. There is no doubt that her legal training was integral to this ability. However, in addition to her professional abilities, her devotion to the cause was what impressed me the most. Because she cared deeply about her fellow patients, she would truly engage in issues until they were resolved — even when it may have been easier to let things go! Second, I never knew of anyone who could say "no" to Candi! She was direct and firm, but in a way that highlighted her Southern charm — a way that her co-board members could not resist! She had an eye for leadership talent and took on the difficult task of asking people to stretch and serve in capacities they themselves had perhaps not considered possible. Without exaggeration, she was instrumental in the process of identifying and grooming each of PHA’s Chairs over the last decade. Third, she was never afraid to speak her truth. I can remember a number of times when she may have had a dissenting opinion from the majority, and in each instance she never once hesitated to share her opinion and reasoning. Fourth, she showed up for everything…I cannot recall her missing one board meeting or subcommittee meeting in all the years we served together. In fact, last June during our board meeting prior to the conference, her pump had failed to deliver her medication throughout the night. In spite of the serious physical and emotional side effects she experienced the next day, she attended every single subcommittee meeting and (trust me) there were a lot of them! Finally, she had a tireless focus on preserving patients’ perspectives on the board. She was constantly reminding leadership of the importance of patient involvement and ensured that board membership reflected this priority.

Finally, on a very personal note, at every meeting Candi would ask me about my two kids — not just about how they were generally, but specifics about their progress in school, how I was adapting as a mom to their various developmental stages, and what I had to look forward to (given her children are a few years older than mine). We would often have these very personal, meaningful conversations in the ladies’ room during breaks and, as strange as it may sound, I came to look forward to our “meetings” — it is true…important things happen in the ladies’ room. If I had known that I would not see her again after our June meeting, I would have invested additional time enjoying personal time with her.

On February 13th, 2009, I attended a beautiful service memorializing Candi’s life. The first thing I saw when I entered the temple was a stunning portrait of Candi, her husband Scott, their two boys, Billy (15) and Andy (13), and their two white, fluffy dogs taken on the beach in Florida. Her smile radiated from this portrait and, appropriately so, it was the only adornment added to the beautiful temple setting. A good part of the service was comprised of close family friends recounting all that Candi had contributed to their lives and the numerous school and community-related efforts with which she was engaged. At the end of the service, Scott and their two boys rose and stood at the podium. Billy listed the things about his mom that he and his brother will never forget and he read the last note that she wrote to them while in the hospital. Scott then gave a wonderful chronological accounting of his life with Candi…it was witty and heartbreaking all at once…he did a masterful job capturing so many details and he had all of us crying and laughing at the same time. He took special care to mention the importance that PHA played in Candi's life.

In all, it was a very touching service, and the prominent theme was Candi's devotion to her family and her immense love for her two boys. Reflecting on our meaningful (albeit disjointed) encounters on meeting breaks, it felt right to remember this as the core of who she was. I was amazed at the number of things she had been able to accomplish both before and after her diagnosis — things she may not have ever mentioned in the PHA setting. I left the service thinking my life is truly better for having known her, and aspiring to become even half the woman she was.

Submitted with reverence and grief for a lost colleague, friend, and true hero,

Laura Hoyt D’Anna


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.