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President for almost 10 years, Frank has made an impact on CAF and the thalassemia community. by Craig Butler |
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You’ve had a long and very productive run as the President of CAF. How do you feel about stepping down? When you took on the Presidency, did you think you would serve for as long as you have? I have very mixed emotions about stepping down. I’m a little nervous, because this has become something of a way of life with me and I don’t know exactly how I’ll define myself next after this big chunk of my life is not there, I don’t know what life will be like without this. And I feel sad, as I won’t be working as closely with the patients and the parents anymore, or with Gina Cioffi and the staff. No matter how involved I’ll be, it won’t be the same. But at the same time, I’m really very excited, because I think that the Foundation is going to be better off with me moving on. I don’t mean that negatively. I just think the Foundation has become so much what I think it should be, what my view of it is, and now it’s time for a new way of looking at things. Now (incoming CAF President) Tony Viola will come in, as I did, with a fresh eye and will see things that can be done that I didn’t see. And I think that kind of change is healthy and will make the Foundation continue to grow and be even more successful. And no, I never thought I’d serve this long. I thought I’d be here for two, maybe four years. But I’ve been very happy to do it. You have been the President during a particularly busy and productive period of time. What are some of the things that have been accomplished during your tenure of which you are most proud? Let me start by saying that I think the Foundation grew a lot during this period, but while I certainly influenced some of that growth, I think it would have grown whether I was around or not. I think we’ve built a really good Foundation, and I was lucky enough to be on board at a time when exciting things were happening and I was blessed with being able to play a part in helping those things to happen. I think one of the things that happened during this period that means the most to me is the Foundation’s new look in terms of our branding and marketing. A big component of this is the website, which was non-existent. It was exciting to see it come into being, to see it take shape, and we were very fortunate to have good friends at Abel Cine Tech who gave it such a fresh and distinctive look. The website and other tools have helped us to communicate far better than we did in the past. I’m also enormously proud of the staff that has been assembled over my time here. Our previous Executive Director, Jayne Restivo, was great, and hired some key people who have really made a difference. Current Executive Director Gina Cioffi has the heart of a parent, the motivation of a volunteer and the drive and brains of a top executive. Our timing was perfect and the staff, as it exists now, is extremely strong at every position. A highlight for me is the blood safety and surveillance program. We are the largest consumers of red blood and were instrumental in getting this extremely important program through congress. I can still remember vividly Alicia selling it to the house appropriations committee. They actually offered her MORE than she asked for it was amazing and that program will absolutely save lives. Perhaps the best thing we did in these ten years is our program to make non-invasive iron measurements available to all patients. In fact we literally took hundreds of patients by the hand and got them accurate liver iron and heart iron numbers. The ability to measure heart and liver iron non-invasively, and especially the heart MRI, may just be the Foundation’s single most important accomplishment of the last 9-10 years. And CAF brought that technology here and worked with major centers to make sure it was available and accurate. Our gene therapy initiative is also something of which I’m proud. I do believe a cure is in sight and I do believe it will come from gene therapy and we really have pushed the envelope on that and have pushed our agenda hard down in Washington. And then there’s our relationships with the fraternal organizations. We’ve done very well with OSIA, that is a legacy I have tried to honor during my time. They’ve been our best friends for a long time and our single largest source of funding over the years. But we’ve also developed relationships with AHEPA, with the Elks, with UNICO. These were things that we haven’t had before, and I’m really proud of helping to forge those alliances. What are some of your fondest memories from your term as President? My absolute fondest memory is Alicia and I counseling a young family over the telephone who had just had a child diagnosed with thalassemia and were in as dark a place as parents could be. I spoke to them, then Alicia spoke to them, then I spoke, then Alicia, back and forth, and we left them more hopeful and better off than they were when they started. That about embodies everything I feel about this Foundation. It’s what we do. It’s the talks, with parents and the patients and the offering of hope and advice and encouragement. Some of the personal fund raising efforts are also meaningful. Like the Let Your Heart Dance Deborah and I hold in Staten Island. We did it for the twentieth year this February. It is a beautiful, heart-warming night and our daughters have become an integral part of making it happen. Or when I ran in the NYC Marathon. We raised tens of thousands of dollars on that one event, but what really made me smile is that it came in $25, $50 and $100 increments – that’s really huge, that so many people cared about what we do. Also, there’s nothing quite like going to a meeting of OSIA, or AHEPA or the Elks and seeing whole groups of people reach out and embrace our patients. People standing up in a room filled with hundreds of their members and offering a personal donation in the name of their healthy child or grandchild. Looking out at all of those people after we show a film or Alicia speaks to them and seeing grown men weep in a display of true empathy. These are tremendous people who have taken on our plight as their own. It’s just such a wonderful thing to witness. Another of my fondest memories is when a woman from Azerbaijan that I met at a TAG Conference gave me a quilt from her country and thanked me for what we do in the states, because it has such an effect on the thalassemia community around the world. That really touched me to know that this organization could offer hope to someone halfway around the world. All of those things stand out among ten years of memories but more than anything I think having a patient give me a huge hug at a conference and then show me her own baby – something that used to be unthinkable - is indelible in my mind. You’ll still be an active and vital member of the CAF Board, of course. In what specific areas do you think you’ll be concentrating your efforts? Primarily, I’ll focus on continuing to push our gene therapy initiative, and also I’d like to have as big a role as I can in keeping the NIH in our corner – and, of course, helping Tony Viola as much as he needs. 5What words of advice would you like to give to incoming President Tony Viola? Two words – prioritize and love. You have to love everybody, love what you’re doing, love the patients and parents and the work. But also understand that everybody wants the President at their functions, everybody wants to talk to the President on the phone. You’re working 60 hours a week in your regular life, so if you have another 20 hours or so to give to this, you’ve got to be very careful about where you put your energies. You’ve got to prioritize and figure out what is the best use of your time and energy to further the goals of the foundation. Are there any people you would like to thank or to acknowledge? Generally every patient who’s ever been open and forthright and told me what we needed to do to be better, or thanked me for things we’ve done better. That’s really been my daily mantra. Care and cure, care and cure… so I want to thank everyone that was willing to come out and share and be involved. Like Woody Allen said, showing up is 90% of life. More than anyone, I thank my wife. With all the hours that I’ve spent with CAF, it’s a wonder she can recognize me unless she sees the back of my head as I’m leaving to attend a meeting or a function or a planning session. She gave up an awful lot of me. And I thank all the people that volunteered, all the chapter members. And definitely the Executive Committee, for the wisdom and insight they’ve given me. At the risk of singling somebody out, I need to give special thanks to Peter Chieco, who was my strongest adviser - always level headed, always on an even keel, and above all, always encouraging. I thank everyone for their patience. When I took the position, I knew nothing and did some things that shouldn’t have been done or made some mistakes. I appreciate everybody’s patience as I was doing my on-the-job training and learning as I went. The executive committee is stocked with the wisdom of over 50 years of standing up for patients. They taught me the history and listened to new ideas. These are people who have given their entire lives to this foundation. Connie Paradiso, Nunzio Cazzetta, Bob Ficarra, Cammie Brandofino and Terri DeFilippo. The greatest lives that ever lived were those who served: Jesus, Mother Theresa, Dr Martin Luther King Jr., and Gandhi to name a few. While they served to such a degree that they changed the entire world for the better, what they also gave us was the notion that there is no higher calling than to serve. I thank everyone for the opportunity to be of service to our small community. I always viewed it as a privilege. No matter what I’ve done in 30 years in my job and career, every time I come home from a CAF affair, a meeting with a doctor, a visit to NIH, talking with staff, a fund raiser, or a meeting with one of our fraternal benefactors, I always look at my wife and say, “THIS - this is the best of what I do.” And I really mean that. I’m also thankful and proud that my being President has had a “legacy factor.” My daughter Christine is now the President of the newly revived NJ chapter. My daughter Alicia has spoken at many meetings to hundreds of people about Cooley's anemia. Both feel fulfilled with their work with the Foundation. They have become life changers, and none of that would have happened to this degree had I not been President. I think that is the best take away I have from my 10 years Is there anything you’d like to say to our patients and families? Live normally. Have thalassemia, but don’t be a thalassemic. Love life. Be involved. Wear your pump, and be healthy, so you’re in line for a cure. Most of all, NEVER lose hope. And if you feel like you’re losing hope or it’s all crashing down, call me. No matter if I’m President or not. My cell is (732) 822-5990 and I’m available 24/7. |
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| Cooley's Anemia Foundation, Inc. TEL: 800 522-7222 FAX: 212 279-5999 info@cooleysanemia.org | ||||||
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