2017 CAF National President’s State of the Foundation Letter

January 12, 2017 – CAF National President Anthony J. Viola shares his thoughts on the state of CAF as the new year begins:

CAF National President Anthony J. Viola

CAF National President Anthony J. Viola

A Happy and a Healthy New Year to our Cooley’s Anemia Foundation Family, Friends, and Supporters.

2017 (wow, lol) is upon us and as I am coming to the end of my ninth year as National President, I feel that the Foundation and the outlook for our patients in the near future is all going in the right direction.

2016 was an extremely successful year in terms of accomplishments and in the improvement of the Foundation’s infrastructure that will pay dividends down the road:

  • The 2016 Care Walk raised in excess of $300,000 for the first time since its inception in 2011, at which time we raised approximately $150,000, a huge increase in just 5 years, a testament to the participation of our Cooley’s Anemia Family and our beloved and appreciated supporters.
  • Our other National Event, the Gala held in June, 2016, was also another fundraising success as the event raised in excess of $150,000. We thank the Gala Chairman, Frank Fusaro, and the “Cigar Night Group” that leads the Gala Committee for all their efforts making this event an annual success.
  • Our Patient/Family Conference held in July, 2016, in San Diego was a resounding success, with almost 300 participants in attendance.
  • Towards the end of 2016, we hired, for the first time in the National Office, a full-time Development Director in Henry Ackermann. Henry has been a fundraiser for small nonprofit organizations such as CAF’s for practically his whole career, so we feel that we have the right person to expand our fundraising supporter base and market the exposure of our Foundation. We have already commenced the process to try and put the Foundation in a good “business place” so that it can sustain itself financially for as many years as the Foundation is needed.
  • A doctor panel at the Patient-Family Conference

    A doctor panel at the Patient-Family Conference

    After attending the American Society of Hematology’s Annual Conference (“ASH”) in December, 2016, it is clear that the next 3-5 years will be an exciting time period for potential new patient treatment options. As a side note, our 2016 CAF-ApoPharma Distinguished Scholar recipient, Aaron Cheng, was a presenter at ASH, a very proud moment for the Cheng family and for CAF. Michael Spino, President of ApoPharma, which funds this scholarship program, was also in attendance to hear Aaron’s presentation. Congratulations to Aaron and to the Cheng family, and thank you to ApoPharma for their generous support of this very important scholarship program.

  • Dr. Sandra Gilbert, our Outreach Director hired 2 years ago, was given the task of expanding the patient registry to not only record approximately how many patients we have in the United States but also to identify where they are located. When Sandy started this process, we had 790 patients listed on the registry, but due to the outstanding work that Sandy has done, the registry is now over 1,000 patients. This program is part of our collaborative agreement with the Centers for Disease Control and Prevention (“CDC”) and Sandy’s efforts have far exceeded the original goals we established with the CDC.
  • At this time last year, we were announcing the departure of our long-time and beloved National Executive Director, Gina Cioffi, who was succeeded by Craig Butler, familiar to the community from his many years as our National Communications Director. The transition has been seamless, and Craig has done an outstanding job in his first year in this position. We are very fortunate to have him leading our Foundation.
  • I would also like to acknowledge the Order Sons of Italy in America, UNICO, The Milana Family Foundation, and our corporate/pharmaceutical partners for their tireless support of CAF. 2016 was another successful year of growth for CAF and it is this continued support that helps make us the success and effective Foundation that we are. We thank the leaders and membership of those organizations for always keeping CAF in their hearts and for their loyalty of support over the years.
A dedicated Care Walk team from Massachusetts.

A dedicated Care Walk team from Massachusetts.

With all the good that 2016 has presented to us, we are always reminded of the additional work that lies ahead of us to try and make our patients’ lives even better. Unfortunately we still lose patients way too early in their lives, though, thankfully, that rate of loss has declined rapidly over the past 15 years. And while patients are indeed living longer, they are experiencing “new issues” that must be medically addressed, hence the importance of our work as a Foundation to keep moving forward.

All in all, I am very pleased as to where we are as a Foundation and as to where we are headed in the near future. CAF continues to be the leading thalassemia patient advocate in the world. CAF is the only organization that provides direct patient services to thalassemia patients in the United States. In general, 80% of every dollar received by CAF is used for the benefit of our patients, whether it is through the research grants that we fund, invaluable patient services, public information to expand awareness, etc.

As the leading representative of the Cooley’s Anemia Foundation, please allow me to thank all our supporters, volunteers (including the Board of Directors and the Executive Committee), and our fine staff for all the hard work that has been done and continues to be done.

And on a personal note, I would like to thank all my friends and family who have supported CAF for many, many years. Your efforts are always appreciated by me, the patients, and CAF, and it is my honor to be National President of this great organization that has done fantastic work for over 60 years. You have inspired me to continue to keep moving forward with the hope that one day we will realize a true cure to thalassemia for all our patients. But in the meantime, please know the positive impact that you have on these extraordinary people that have to deal with a medical condition on a daily basis but who not only endure, but exceed the boundaries of their medical issues to strive for excellence every single day.

God bless all of our Cooley’s Anemia Family.

Anthony J. Viola

CAF National President

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