We're Leaders in
World Class Medical Research
You can help
March 2, 2017- CAF launched our “Volunteer Spotlight” Series last year to highlight the stories of some of the many selfless volunteers who play a major role in making our work possible. We are truly grateful for all of the love and heart-felt effort each of our volunteers puts into organizing awareness events, blood drives and fundraisers, and we thank them for their consistent commitment to improving the lives of individuals with thalassemia.
Cammie Brandofino has been a dedicated volunteer for CAF since 1978 and became a board member in 1985. She currently serves on the CAF National Executive Committee and the Board of the CAF Staten Island Chapter. Her fellow CAF Executive Committee Member, Terri DiFilippo, says, “She is never too busy or too tired to work tirelessly for all with Cooley’s anemia. Her vision is clear—help the patients in their quest to live the best possible life while enduring the vigorous routine of chelation.” We thank Cammie for her dedication to this vision, and for allowing us to share her story.
My name is Cammie Brandofino and I became involved with the CAF after my daughter Danielle was diagnosed with Cooley’s anemia in 1978. At the time, there wasn’t a chapter available on Staten Island so I would travel to the Brooklyn Chapter to attend meetings. Once I began attending these meetings, I met a wonderful woman named Terri DiFilippo. Our children didn’t go to the same hospital for transfusions so I only saw her at meetings and functions hosted by the Brooklyn Chapter at that time. When many of the parents living in Brooklyn moved to Staten Island, it was time for us to open a chapter there. We did so and received our charter in 1985. Terri was still living in Brooklyn and we saw each other at National Executive Committee meetings. She moved to Staten Island several years later and became an integral part of the Staten Island Chapter as she is today.
When Danielle was first diagnosed, I felt lost and terrified and knew that I had to find out more about this disorder from others more experienced in dealing with the day to day problems arising from treatments, hospitalizations, etc. My husband and I and the rest of the family needed to help Danielle cope with what was happening to her. Our lives were changed and so was hers. Volunteering with CAF has kept me focused on what’s important in life. It has helped me deal with the realities of having a child living with Cooley’s and has been a most rewarding experience. On this journey, I have been blessed to work with many other parents facing the same difficulties which has created an immense bond between us. We would reach out to each other, compare notes on what new treatments were on the horizon, and give each other courage when we found out yet another patient had passed away. Thank God those days have given way to healthier patients living a wonderful quality of life into their 50’s and 60’s.
One of my favorite fundraising events would have to be our annual Fashion Show held on Staten Island. The patients would be the stars of the show, they looked forward to it every year and were so proud to strut their stuff. A few years ago we held a “Miracle Babies” Fashion Show where we had the patients and their children walk the runway. There wasn’t a dry eye in the place. One of the most rewarding functions of our chapter and one in which our volunteers enjoy the most is when we give stipends to the patients involved in our chapter to help defray some of their out of pocket medical expenses. When we present them with checks at our Christmas meeting, they are so grateful for whatever we can give them and our members are thrilled that their fundraising efforts have been instrumental in helping them.
Fortunately, family and friends have kept our chapter going for over 30 years but a few years ago it was in danger of folding because of dwindling numbers of volunteers. Suddenly, we had a new group of younger, energetic and selfless women who came together to re-create a vibrant, still viable chapter. They have come up with some creative fundraising ideas and have helped to activate awareness in our community.
Our calendar over the past several months and going forward are filled with wonderful events. We’ve had blood drives, a DooWop Entertainment/Dance luncheon, Cosmic Bowling, Zumba Exercise fundraisers, and Community Outreach. We are looking forward to our annual Golf Outing and of course participating in the 2017 Care Walk. And that’s only the first 6 months of 2017!
We are very fortunate for our patients living on Staten Island and Brooklyn that come and participate in our events. They are the faces our volunteers want to personally get to know who they’re helping and why. Cooley’s Anemia Foundation will forever be a major part of my life.