Introduction Letter from New CAF President, Peter Chieco
June 26, 2018 – Newly elected CAF National President Peter Chieco introduces himself to the community and shares his vision for the Foundation.
It is an indeed an honor and privilege to serve CAF again as National President. I would like to start by acknowledging and thanking my immediate predecessor as President, Anthony Viola, his wife Susan, and their family for the incredible success they achieved during Tony’s ten years as President! Their sacrifice was great, and we all benefitted from the results. We are eternally grateful for all their efforts. And we are fortunate that Tony has agreed to continue in the vitally important role of our liaison with the Order Sons and Daughters of Italy in America, one of our most committed and valued allies.
Back in 1994, when I was 33, I was honored to be elected to this position, and despite the big time commitment, I loved every minute of the four year term. My family grew up with a positive experience in living with the disorder, and the Foundation helped foster that attitude. Our middle daughter Michelle is a great example of how important the right outlook is in living successfully with thalassemia. We are so proud of her and her siblings for their commitment to make a difference in the lives of others.
The truth I learned over the years volunteering, which still holds true to this day, is that you receive so much more in return for your efforts to help.
Just like today, we had many challenges to overcome in 1994. Some we achieved, such as the creation of the Thalassemia Clinical Research Network. Others we laid the groundwork for, such as MRIs for heart and liver iron and the eventual approval of Ferriprox.
Thank goodness most patients are healthier now than they have ever been. There is every reason to be hopeful that this trend will continue and that eventually a cure with limited risk will be available for all.
I asked to serve as National President again for several reasons: It felt like the right time for my family and me, the Foundation has been one of the best blessings in our life, and the need is still great here in the U.S. and especially in developing countries.
My hope is that we can increase the size of the Foundation’s impact for all patients. At our board meeting on May 19th, we passed several new financial assistance programs to help serve our patients and their families better. They are: Annual visit support to centers of excellence, stipends for adoptions of thalassemic children, and higher education support for children of thalassemia patients.
These programs, in conjunction with our current broad based activities, and the others to follow, highlight the enhanced ways the foundation can continue to lead in this global battle.
Of course, all of our activities require donations, and we are very focused on creating different ways donors can express their support for us. Currently, we primarily raise funds through our chapter events, national Gala, Care Walks, and general donations.
In fact, our recent national Gala was a great success on June 7th. A special thank you to Tracy Antonelli and her husband Patrick and their three incredible daughters for their amazing presentation as one of the night’s honorees. They stole the night and set the tone for a great event! Following them, Nick Leschly and bluebird bio were recognized for the hope they offer of a better future for our patients through gene therapy; this was an excellent example of the tremendous changes in recent years and why we feel so hopeful for the community.
We have also added two new fundraising programs. The first is a formal legacy society to recognize individuals and families that plan to bequeath us funds through their will, retirement accounts, insurance policies, and other estate bequests. We also are finalizing the creation of a permanent endowment fund to secure a stable source of funding and honor in perpetuity the gifts of substantial donors.
I ask everyone to consider ways they can help the Foundation financially, either directly or through outreach to others. Please contact the national office (212-279-8090 x 204 or firstname.lastname@example.org) for assistance.
It is a very exciting time in the history of this disorder and yet challenges still remain in increasing the quality of life for all. Many patients struggle with complications from the impact of severe anemia, blood transfusions, and chelation therapy over time. Problems with normal growth, endocrine function, fertility, bone density, and blood safety and reactions all remain, and I have not listed all the potential complications. Longer lives have also created challenges with transition to adult care from pediatric settings, a great achievement, but one that can be problematic and stressful.
You have our word that we will work diligently to try and overcome every issue we face and to invest the funds raised wisely and for the benefit of our patients.
Our goal is simple: every patient, anywhere, deserves the opportunity to live their fullest life possible.
I thank you deeply for all the support you have given us over the years, and hope we can find ways together to continue the great tradition CAF has brought to its patients.
God bless, and with love,