CAF President on the State of the Foundation


February 1, 2016Below, CAF National President Anthony Viola shares his “State of the Foundation” message, looking back at some of the highlights of the past 8 years and expressing thoughts on moving forward. We thank Tony for his deep commitment to the fight against thalassemia and his strong leadership as the CAF National President.

CAF National President Anthony Viola

Dear Friends:

I am proud to be in my 8th year as your National President for The Cooley’s Anemia Foundation, Inc. (“CAF”), an extraordinary health-related charitable organization that has strived for excellence in thalassemia patient advocacy in the United States for over 60 years.  To be a part of this Foundation since 1989 when I first became a volunteer and I first became a participant of CAF with the hope of assisting in making a difference for our patients is truly an honor.

As most of you already know, I had two cousins that passed away from complications relating to thalassemia, Nunzio and Ralph Cazzetta, so I have had a lifetime’s worth of experience of being able to see what would assist our patients and their families in the most beneficial ways. My original agenda back in April, 2008 was driven by that lifelong experience.  While we are always interested in a cure for our patients, it was my #1 goal to ensure that our patients have the most effective tools available to them to ensure that they live the healthiest and most comfortable lives possible until that cure is finally realized.

I looked back at my speech to the Board of Directors in April, 2008 when I was first elected to the volunteer position of National President to see what I had said at the time and to see what my goals were for the Foundation. Here is a summary of the goals that I wanted CAF to accomplish during my term as National President:

  • Improved care and better quality of life.
  • Reinforce the compliance issue.
  • Minimize the health insurance issues that our patients face on a daily basis.
  • Increase CAF’s donor base.
  • Increase volunteerism within the Foundation.
  • Review the Foundation’s Bylaws.
  • Create an even better relationship between CAF and our patients.

Here is a general timeline of the Foundation since I was elected National President in April, 2008:

 

2008

Exjade had been approved in 2005, marketed in 2006. Desferal and Exjade were the available chelators in 2008.

Gene therapy transplant trial in France was ongoing, with first successful transplant in a patient with e beta thalassemia.

Memorial Sloan Kettering Hospital had received approval for a gene therapy trial in 2007.

CAF begins conducting first focus groups.

CAF hires Social Worker Kathleen Durst.

 

2009

CAF holds its 9th Cooley’s Anemia Science Symposium with the New York Academy of Sciences in NYC.

The application for Ferriprox (“L1”) gets submitted to the FDA.

CAF offers Gene Therapy Grant applications for the first time to gene therapy researchers.

Oakland Standards of Care posted for thalassemia patients here in the United States.

 

2010

CAF participates in CDC’s 1st National Conference on Blood Disorders in Public Health.

The Registry and Surveillance System for Hemoglobinopathies (“RUSH”) initiated.

CAF conducts online nutrition survey (shared with Nutrition and Hemoglobinopathies Working Group of NIH).

 

2011

CAF holds the first CareWalk, raising over $150,000 with approximately 1,000 participants.

CAF works to get thalassemia-related objectives included in Healthy People 2020.

FDA approves Ferriprox (“L1”).

ICD-9 Codes are modified to more accurately reflect thalassemia diagnoses.

 

2012

CAF participates in CDC’s 2nd National Conference on Blood Disorders in Public Health.

CAF holds its initial Patient Conference in Boston, with over 200 attendees participating.

Luspatercept begins clinical trial in thalassemia.

Memorial Sloan Kettering and bluebird bio commence gene therapy clinical trials.

 

2013

CAF holds its 2nd annual Patient Conference in Philadelphia, with 250 attendees participating.

Exjade is approved for non-transfusion-dependent thalassemia.

The last “Cigar Night” is held. From 1999 to 2013, the Cigar Night, an annual fundraising event, raised in excess of $2.2M for the Foundation.

Gina Cioffi and I are honored by the New York State Order Sons of Italy. OSIA is CAF’s biggest fraternal organization financial supporter.

CAF honored by  His Highness Sultan Bin Khalifa Al Nahyan with the first “Thalassaemia Society of Excellence Award” for our outstanding and innovative work on behalf of patients.

 

2014

CAF celebrates its 60th anniversary with the Foundation’s inaugural “Gala” at Lighthouse Chelsea Piers. Over 350 attend, raising over $300,000 for CAF.

CAF holds its 3rd Annual Patient Conference in Chicago, with over 250 attendees participating.

ApoPharma announces that it will support a “Distinguished Scholar Award” program through CAF.

 

2015

CAF holds its 10th Cooley’s Anemia Science Symposium with the New York Academy of Sciences in Chicago.

CAF holds its 4th Annual Patient Conference in New Jersey, with over 250 attendees participating.

FDA approves Jadenu.

CAF conducts second series of focus groups.

CAF testifies before the FDA Pediatric Advisory Committee Meeting on Exjade.

The CAF Registry hits 950 patients (up from approximately 750 in 2008) with the support of the CDC.

The 2015 CareWalk reaches almost $275,000 in donations and almost 3,000 participants.

 

2008-2016

CAF has awarded a total of $2,826,375 in Fellowships and Research Grants to researchers and physicians as recommended by our Medical Advisory Board.

Since 2008, Ferriprox (“L1”), Exjade for non-transfused dependent patients, and Jadenu have been made available for thalassemia patients for their daily treatment regiments.

The CAF registry of patients increased over 25% since 2008.

CAF has held 2 very successful Science Symposia (2009 and 2015), bringing in top thalassemia experts from around the world to report on their progress in assisting thalassemia patients.

CAF has held 4 Patient Conferences (2011 to 2015) at which attendance has averaged between 200 and 250. The 2016 Patient Conference will be held in July, 2016 in San Diego.

CAF has raised more than $12.8 million in total funds between July, 2008 and June, 2015 .

The CareWalk increased from 1,000 participants to 3,000 participants, increasing its donations from $150,000 to $275,000.

The Annual Gala Dinner Dance, a National fundraising event, is held to replace the Cigar Night with the intention of drawing more of a donor base with a bigger event than the Cigar Night, raising over $550,000 from just 2 events (2014 and 2015).

CAF’s annual gross income averaged approximately $1.7M annually from 2008 to 2011, has been increased to $1.9M annually from 2012 to 2015.

CAF currently meets Better Business Bureau ratios to ensure that all funds received are spent in the most efficient ways possible.

The Past and the Future

I would like to acknowledge our outgoing, long-time National Executive Director, Gina Cioffi. Effective January 1, 2016, Gina moved on to other areas of thalassemia patient advocacy outside of CAF.  Gina is to be credited with many of the “timeline” items I listed above during my past 7-8 years as National President.  Gina’s vision and passion for our patients and their families was extraordinary and it has shaped the direction that CAF continues onto today and into the future.  We wish Gina all the best and we thank her for her tremendous service.

I would also like to welcome our long-time National Director of Communications, Craig Butler, into the role of National Executive Director. Craig’s almost 15 years of CAF experience made him the easy choice for taking the baton from Gina.  Craig’s knowledge of the Foundation and his experience in grant writing and social media will serve him and the Foundation well going forward.  Please join me in showing Craig your support.

The CAF staff consists of a National Executive Director (Craig Butler), National Fundraiser (Tony Laurino), Patient Services Manager (Eileen Scott), Patient Outreach Director (Sandy Gilbert), Associate Director of Development and Communications (Mary Woldegiorgis), Director of Finances (Sofia Buczynski), Patient-Family Social Worker  (Kathleen Durst), and an Administrative Assistant (Darlene Lawlor).  During 2016, we will seek to expand the marketing department of the Foundation by adding additional staff to assist in increasing the donor and volunteer bases of CAF.

In Conclusion

During the past 7-8 years the Foundation has veered into a positive direction and thalassemia patients within the United States are doing better, in general. However, there is still a lot more work to do.  Not all patients are doing “well.”  Older patients are experiencing new challenges because they are reaching ages that thalassemia patients before them have never reached.  There are still many patients in the United States that are not registered on the CAF Registry.  These are areas that require our continued attention.  The Foundation continues to reinvent itself to meet the needs of its clients, our patients and their families.

In addition, since CAF is a very small Foundation as compared to other health-related organizations, it is a priority that we continue to increase our donor and volunteer bases. The Foundation has put emphasis on its annual CareWalk due to the ease of running such a fundraising event and the overall awareness to patient care that it promotes.

As a leader in thalassemia patient advocacy, CAF continues to pave the way for awareness so the Foundation can offer the highest quality patient services possible. CAF encourages recommendations as to how we can do even better going forward.

Overall, the main goals I set forth for the Foundation in April, 2008 were either met or have been addressed and are part of the ongoing process. I am excited to see what the next 5 years will bring and I am extremely honored to be a part of it.

Thank you for all your support over the years. CAF continues to be an excellent investment in donor funds.  The progress over the past 8 years has been astounding and it is a great return on that investment.  Complacency is not in the Foundation’s DNA and since I have committed to another 2 years of service starting in May, 2016, I vow to continue the positive trend the Foundation is currently enjoying.

Anthony J. Viola

CAF National President

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