Remembering PXEer Al Ferrari
by Angela Ferrari
with Terry Mac Dermaid, Executive Director, PXE International
This article first appeared in the June 2014 issue of the PXE International eNewsletter.
February 7, 1936 - December 16, 2013
On May 10, 2014, 60 family members and friends gathered for the Al Ferrari Celebration of Life Memorial at Greek Town Café in Denver, CO.
Al was one of the first people diagnosed with pseudoxanthoma elasticum (PXE) by Dr. Kenneth Neldner, who was one of the first researchers to do extensive research on PXE. Al was also co-founder and later President of the National Association of Pseudoxanthoma Elasticum (NAPE).
Sharon Terry, the CEO of PXE International, commented: “I called Al Ferrari in 1994 when my children were both diagnosed with PXE two days before Christmas. He is the first person I ever spoke to with PXE. He was very helpful. We worked together to establish the New England chapter of NAPE. I am very saddened, and grateful to have known him even a little – we subsequently met several times.”
Al’s daughter, Angela Ferrari, shares Al’s early PXE history:
“My dad was diagnosed with pseudoxanthoma elasticum in 1973, when he was 37. He was driving home from Wyoming one night and it was very dark. He kept seeing flashes of light like shooting stars. This happened several times. So he went to his eye doctor, Dr. Winograd, when he returned. The doctor had never seen anything like the results of his eye exam, so they referred him to the University of Colorado where he met Dr. Kenneth Neldner and another ophthalmologist. Dr. Neldner had just received grant money for a study related to PXE. My father then spent the next two months at the University as a research team participant.
“I remember that my parents were very concerned about my sisters and I having the mutated gene and getting PXE. My siblings and I also gave skin biopsies to the research team. On the trip to give biopsies we met Dr. Neldner, and I wanted to know from him what was happening to my dad. So I asked a lot of questions. I look like my dad and was very concerned that I, too, would have PXE later in life. Dad was starting to loose his sight slowly by then also.
“Dr. Neldner did not know much at that point, but told me there were only nine people that they knew of worldwide that had been diagnosed with PXE. That was why they were keeping my dad in the hospital for two months, to do research. Dr. Neldner was very understanding about why I was so afraid, and would keep us very well informed as they learned new things. He was great. I could call Dr. Neldner anytime with concerns and he would get back to me immediately! It made me very interested in the medical field as a kid.
“My dad and Dr. Neldner decided to start a support group for others that were going through the same thing my family was going through. It became NAPE, the National Association of Pseudoxanthoma Elasticum, which incorporated as a non-profit 501(c)3 in 1988. My dad kind of transcended into the presidency of NAPE. Dr. Neldner and my father then got new members, including Sharon and Pat Terry, and started doing fund raising for NAPE and for PXE research.”
At the time of his death, Al’s tissues and organs were donated to the PXE International Registry and BioBank. Angela is passionate about this gift: “My family and I wanted the eye and tissue donation because of his participation on the research team at the University of Colorado. We feel like since he was one of the first people diagnosed, that maybe he had something that would be of interest given the length of time he had lived with PXE. Maybe he had something different that other tissue donors did not. He would have wanted us to donate anything to help further the research. You have no idea how much this means to my family. Thank you for making this happen.”
We in the PXE ‘family’ are immensely grateful for Al’s work on PXE, for his co-founding NAPE, and for this last donation to science. Thank you to Angela for making sure her father’s contribution is in the hands of excellent stewards of the vision Al had for alleviating the suffering of others with PXE.