March 2008 international news

TIF Schedules International Conferences Lifeline Cooley’s Anemia Foundation The Thalassaemia International Federation will hold the 11th International Conference Leading the Fight Against Thalassemia on Thalassemia and Hemoglobinopathies and 13th International TIF Conference for Thalassemia Patients and Parents from October 8-11 (with special pre-Conference conference is crucial in building unity and $250 Singapore (approximately $177 workshops on October 7) in Singapore. Somma Talks About His Time as President and support throughout the world.” U.S. on 2/21/08) for standard registration. These conferences bring together doctors, (Cancellations and requests for refunds The theme of this year’s conferences patients and families from around the world, must be made in writing and received is "Equal Access to Quality Medical Care But at the same time, I’m really very excited, I’m also enormously proud of the staff that creating a unique international forum for by July 15.) for Every Patient with Thalassaemia." because I think that CAF is going to be has been assembled during my time here. the dissemination of information about A wide range of topics will be discussed, For more information, visit better off. I don’t mean that negatively. I just Our previous Executive Director, Jayne thalassemia. Equally important, the including Cardiac Complications, Iron http://www.thalassaemia2008singapore.org. think CAF has become so much what I think Restivo, was great, and hired some key conferences allow patients and families Chelation, Psychosocial Care and it should be, and now it’s time for a new way people who have really made a difference. from different countries to meet and learn Thalassemia as a Global Health Problem. of looking at things. That kind of change Current Executive Director Gina Cioffi has from each other, thereby strengthening Significant support for the publication is healthy and will make CAF continue the heart of a parent, the motivation of a the global thalassemia community. The deadline for early registration is July 15; and distribution of LIFELINE is provided to grow and be even more successful. volunteer and the drive and brains of a top In a welcoming message online, Derrick Lim, for standard and group registration, it is by the Centers for Disease Control executive. And the staff, as it exists now, Chairperson of the Conference Organizing August 31. Registration fees for individual and Prevention, New York State What are some CAF accomplishments of is extremely strong at every position. Committee, states that “the hope and patients are $160 Singapore (approximately Department of Health and Novartis which you are most proud? Pharmaceuticals mutual support experienced in this $114 U.S. on 2/21/08) for early registration I think CAF grew a lot during this period, Another highlight is the blood safety and but while I certainly influenced some of that surveillance program, which will absolutely growth, I think it would have grown whether save lives. And perhaps the best thing we did in these nine years is our program Non-Profit Org. I was around or not. I was lucky enough to be on board at a time when exciting things to make non-invasive iron measurements U.S. Postage Frank Somma were happening, and I was blessed with available to all patients. Paid CAF speaks with Frank Somma, who on being able to play a part in helping those Our gene therapy initiative is also something 330 Seventh Avenue, #900 New York, NY 10001 New York, NY April 26 will step down as CAF President things to happen. of which I’m proud. I do believe a cure is Permit No. 4814 after 9 years. Complete interview is at One thing that means a lot to me is CAF’s in sight, and I do believe it will come from Address service requested www.cooleysanemia.org. new look in terms of branding and gene therapy, and we really have pushed How do you feel about stepping down? marketing. A big component of this is the the envelope on that. I have mixed emotions. I’m sad, as I won’t website; it was exciting to see it come into And then there’s our relationships with the be working as closely with the patients and being, and we were very fortunate that fraternal organizations. OSIA has been our the parents, or with Gina Cioffi and the staff. AbelCineTech gave it such a distinctive look. best friend for a long time and our single (Cont’d pg 15) contents

Legislative News 3 • CAF Talks with Congressman Frank Pallone, Jr.

• Spring Gala • Students Helping Hand • Frank Comerford Honored • Novartis Grants • Polar Bears Philanthropy News 4 • MBIA Donation • Brasserie Cassis Dinner • Kids Marathon • Bronx Tale • OSIA • P2 Grant Winners • Meet Kathleen Durst • Patient Incentive Awards • CDC • Keeping Blood Supply Safe Patient News 9 • Patient Profile: Lisa Giudice • 2008 TAG Conference Date

Medical News 12 • Profile: Dru Foote, Children’s Hospital & Reserach Center at Oakland • CME Seminar in Cincinnatti • Study Focuses on First Time Blood Donors • Journal Reviews Cardiac Problems in Thalassemia

Chapter News 14 • Chapter News • Wagner Students Break Blood Drive Record

Board News 15 • CAF Speaks with President-To-Be

International News 16 • TIF Schedules International Conference legislative news

President’s Message CAF Talks with Congressman Frank Pallone, Jr. Second, I’m not going anywhere! I will still follow I’ve had access to the greatest medical minds my heart and give all I can to the Cooley’s anemia in the world and have forged friendships and family. alliances with the people who will directly and significantly improve care or find a cure. Doctors On the dark side, I have written far too many like Dudley Pennell in London, John Wood in sympathy notes and attended far too many Los Angeles, Michel Sadelein and Stefano Rivella from our commitments to biomedical services. I have spoken to far too many Frank Pallone, Jr. is currently in his 10th in NY and Dave Nathan and Philippe Leboulch in devastated loved ones and had to console far full term as a member of the U.S. House research. Instead, I would like to see Boston. They have educated me, helped me to many new parents. of Representatives, representing the another doubling of the NIH’s budget so that Frank Somma to know what to ask for and in what direction I believe strongly that this part would have been we ought to go and have been beyond generous 6th Congressional District of New Jersey. we can provide our scientists with It is with mixed emotions that I address you in this, even worse without our strong Foundation. Where with their knowledge and time. Since January 2007, he has served as the funding they need to bring these new my final President’s message in Lifeline. would we be without Gina Cioffi to drive and push and innovative cures to patients’ bedsides. Our fundraising efforts have been bolstered the Chair of the House Subcommittee I have been doing this for about 10 years now, programs that make such a big difference or Craig as well. The OSIA family has become our family, on Health, which has sole jurisdiction over and to be frank, this job has become my definition Butler to make information so accessible? Without As Chair of the Health Subcommittee, what making us their priority and raising funds and Medicaid, the Food and Drug Administration of self. I am a Dad and a husband and a son Eileen Scott at the office to truly empathize with challenges do you want the Subcommittee awareness for us for many years. The people and a brother, but next I am the President of this patients and parents, or Eva Chin-Li who handles (FDA), the National Institutes of Health I have met through OSIA have become part of to tackle in the coming years? Foundation. It has become an integral part of patient issues with the passion of a patient (NIH) and the Centers for Disease Control my family as well. We are blessed to be able to who I am. When I meet people for the first time, herself.? Our office administrator, Jessica There are a number of issues that I would partner with other fraternal organizations. Most and Prevention (CDC), and shares it is part of how I explain who I am and what I do. Palmerini, does a yeoman’s job each day, and notably in recent years are AHEPA, the Elks jurisdiction of Medicare with the Ways and like for the Health Subcommittee to address Not doing it has never really occurred to me. Alyssa Youngerman runs events and raises funds and UNICO. All of these alliances have yielded Means Committee. It oversees public in the future. Most of all, I would like for us in a way that makes each and everyone of us It is the best of me. I feel divine intervention when beautiful results because of their members’ proud to be a member of this foundation, and, health, biomedical programs, food and drug to reform our nation’s health care system I think about how Cammie Brandofino invited me great sense of empathy toward our patients of course, our beloved Sophie Buczynski watches safety, mental health and research, hospital to provide universal coverage. In a country to join the Executive Committee and how that and parents. every dollar as if it were her own - maybe more so! as wealthy and innovative as ours, there is Committee trusted me to hold this office and construction and all health care homeland It is because of this staff, these doctors and represent CAF for so long. I feel as though this Not actually in our offices but still a huge part security-related concerns. no reason why we should have 47 million our partners and volunteers that I can say without is part of the reason Alicia was born to Deborah of our team is the brilliant and ever-affable Lyle Frank Pallone Americans who lack health insurance, and fear of reproach that CAF is a superb and me, so that someday I could give the best Dennis, who along with Erika Miller has made us The Congressman graciously took time organization and “world class good” at caring far more who are underinsured. There are of myself to people who would appreciate and a force to be reckoned with in Washington. from his busy schedule to answer some original NDA and BLA submissions within for our patients and influencing the world that also a number of more immediate issues benefit from the effort. questions from CAF. 6 months of receipt. In order to accomplish I believe just as strongly that the doctors we have affects us. that we plan to address, including providing This notion by itself is what has sustained me. been able to recruit into our house are passionate these goals, this legislation authorized the In the final analysis, let me tell you that I believe New drug approvals by the FDA have a pathway for FDA approval of generic You did appreciate the effort and let me know and dedicated and I have leaned on them heavily collection of user fees in the amount of fervently that this disease will be cured in slowed in recent years, largely in response biologics; providing FDA with the authority so often that it made me always want to do more for ten years. Giants like Alan Cohen, Elliott $392.8 million annually, an $87.4 million my lifetime. I believe that with every fiber of my to honor your faith in me. Vichinsky and Ellis Neufeld, who have served as to concerns about drugs which received to regulate tobacco products; and being and pray each day that God will bless us increase over the user fees previously Chairs of the Medical Advisory Board during my approval but which were later determined strengthening our nation’s food, drug I was fueled because I met so many patients and with this cure before the next tear is shed for a authorized. term, and Pat Giardina, who takes brilliant care of and import safety laws. parents over the years. It was never work, never patient lost. If I can leave you with one thing, to carry a larger degree of risk than my daughter and so many others. All have helped difficult to commit to. You made it so that I could it is that. Pray. Pray each day that we are anticipated. Yet there are many patients The Cooley's Anemia Foundation has a me throughout the years to understand so many Do you have anything you would like to say not imagine doing anything else. implementing God’s plan. That these people who are frustrated that the process special interest in gene therapy, which issues to the members of the thalassemia I mention are blessed with the wisdom and is slowing down approval of therapies we believe holds enormous potential That is the issue now. Where to from here? community? Pharmaceutical experts who are pressing hard for strength they need to continue to bring which could prove beneficial to them. to providing a curative approach to Well, first of all, I am thrilled for CAF because better treatment have included us in their process immediate comfort and an inevitable cure to all thalassemia, as well as to many other I would just like to thank you for the “a new pair of eyes” will be looking at things. and through it all become part of our family. of those suffering whom we love. And that What steps have you taken to help resolve And just as I saw things that could be done based Wonderful people like Dr. Michael Spino and every one of our patients will hang on, and stay this situation? genetic disorders. Do you support a larger advocacy work that you are already doing. on my experience, I am sure our incoming Dr. Fernando Tricta show a dedication and genuine healthy, until a cure is found. role by the federal government in I can’t tell you how important it is that policy Balancing the need to approve new and president will see things differently than I and care for our patients that goes well beyond encouraging research in gene therapy, makers in Washington hear from those innovative therapies that will benefit therefore make positive changes that would not professional acumen. and if so, what form might that role take? of you who are back home and impacted have occurred to me. American patients while ensuring only safe by thalassemia or any other disease and effective drugs enter the market is an Yes, I fully support increasing research in or condition. statement of purpose important policy goal. In order to address gene therapy. Mapping the human genome the timely approval of new drugs and was an important scientific undertaking The Cooley’s Anemia Foundation, incorporated in 1954, is the only national, EXECUTIVE COMMITTEE biologics, I incorporated new performance from, which we are now beginning to realize nonprofit health organization dedicated to serving patients afflicted with various Frank Somma President goals in the Food and Drug Administration real benefits. Thanks to the Human Genome Anthony J. Viola 1st Vice President forms of thalassemia, most notably the major form of this genetic blood disease, Amendments Act of 2007. Under this we Project, we have better tools at our disposal Terri DiFilippo Treasurer Cooley’s anemia. established new timelines for the Food and to diagnose and treat a number of diseases Diane Kamble Secretary Drug Administration (FDA) to review and act and disabling conditions. We need to build Cammie Brandofino Jesal Kapasi the foundation’s mission Nunzio Cazzetta Richard Mancino on New Drug Applications (NDAs) and upon the efforts that are already under way Peter Chieco Concetta Paradiso • Advancing the treatment and cure for this fatal blood disease. Biologic License Applications (BLAs). by fully funding our biomedical research For up-to-the-minute news Ralph Colasanti Christine Somma • Enhancing the quality of life of patients. For example, the FDA would have to review centers, particularly the National Institutes Pennie Decas Paul Tucci • Educating the medical profession, thalassemia trait carriers and the public about thalassemia-related Robert Ficarra Elliott Vichinsky, M.D. and act on 90 percent of standard original of Health (NIH). I was highly disappointed Joseph Giammalvo Dr. Robert Yamashita about thalassemia/Cooley’s anemia. NDA and BLA submissions within 10 by the President’s Fiscal Year 2009 budget issues, visit our website, Diane Gulbenkian Frank Zito months of receipt. They would also have proposal which would freeze funding for the www.cooleysanemia.org Gina Cioffi, Esq. National Executive Director CAF : 330 Seventh Avenue, #900 New York, NY 10001 to review and act on 90 percent of priority NIH. Now is not a time for us to walk away Craig Butler Lifeline Editor (800) 522-7222 (212) 279-8090 (212) 279-5999 FAX www.cooleysanemia.org Reproduction of material published in Lifeline for educational purposes is encouraged, provided it is accompanied by the following 2 attribution: according to Lifeline, the national newsletter of the Cooley’s Anemia Foundation. Cooley’s Anemia Foundation 3 philanthropy news

Join Gianna & Chazz Palminteri Novartis Cigar Smoker Get Them Some Hot Chocolate – Now! for a Gala Evening Funds CAF Honors Psychosocial Frank Things kick off at 6:00 with cocktails, Some brave friends of CAF learned the Arieta, Robert Currao and J.C. Sciacca. followed by a delicious dinner and music Program, Comerford true meaning of “chill out” when they Several of those participating gathered from a first rate band. You can also count participated in the New Jersey Elks’ donations by setting up a personal fund on a wide array of tempting silent auction Medical Seminar 1st Annual Miracle Plunge on March 8. raising page at www.FirstGiving.com. These items, as well as a spirited live auction, These hardy souls made like polar bears, pages, which can be used for many different led by a very special celebrity auctioneer. Novartis Pharamceuticals has provided CAF will honor Frank Comerford, dousing themselves in the frigid Atlantic fund raising events, were quite successful. two grants totaling $97,951 to CAF the President and General Manager waters off of Belmar, NJ, all as a way Our Humanitarian of the Year is Linda (For more information about setting up your to fund two important programs. of WNBC-TV, as the Humanitarian of the of raising funds for CAF and for the Elks’ Weiss, and we’ll also be honoring the own FirstGiving page to raise funds for CAF, Year for its 2008 Cigar Smoker. Camp Moore, the two charities chosen Merchants of Little Italy, Bronx: The Psychosocial Pilot Program has contact Alyssa Youngerman at as beneficiaries of the Plunge. Christopher Borgatti (Borgatti Ravioli), enabled CAF to engage a social worker Born in Brooklyn, Mr. Comerford graduated [email protected].) David Greco (Mike’s Deli), Robert Paciullo (see page 9) who will conduct a series from Georgetown University in 1977 and Among those who donned swimsuits were “We are very grateful to the NJ Elks for (Roberto’s Restaurant) and Jerome Raguso of meetings, both “live” and “virtual,” began his association with the TV industry CAF National President Frank Somma, their help in the fight against thalassemia,” (Gino’s Pastry Shop). which will begin a dialogue on psychosocial in 1981 with Storer Television Sales in CAF National Executive Director Gina said Gina Cioffi, “and we especially thank issues that patients face when dealing with New York City. He then worked at WSBK- Cioffi, CAF NJ Chapter President Christine This year, we are also excited to announce John Sentner and Rich Bard for their role thalassemia. This dialogue will help lead TV in Boston before joining WNBC in 1994. Somma, Alicia Somma, Rachel Somma, that Joe Piscopo and the Red Bank Jazz in the Miracle Plunge.” to a better understanding of the specific He was appointed to his current position Michael Horton, Jimmy Coler, Todd Orchestra will present a special issues that individuals may experience, in 2002. Garrison, Jim Maida, Erin Rucigliano, Amy performance, featuring highlights from Joe’s which will in turn lay the groundwork for Mr. Comerford is very active in community Las Vegas club act. Anyone who has seen developing more effective strategies service and serves on several charitable Joe Piscopo in any of his many television for handling these issues. Gianna & Chazz Palminteri or film appearances knows that we are boards and committees, including the Child MBIA Brasserie in for something truly special. Novartis Pharamceuticals’ second grant Abuse Prevention Program, the Association It’s official. No matter what your calendars will fund the 5th Thalassemia Update, for a Better New York and the Archdiocese Foundation Cassis Springs may say, Springtime officially begins April 9. Tickets for the “Springtime in New York a Continuing Medical Education (CME) of New York Catholic Charity. That’s the date for this year’s annual Gala” are $350 each, with $200 of each Seminar which will provide doctors and Donates to for a Cure “Springtime in New York Gala,” held at ticket tax-deductible. Sponsorships and health care providers with the most New York’s celebrated Tavern on the Green, journal ads are also available; contact up to date information on thalassemia care, Chaper March 11, friends of CAF gathered at Long the Central Park Showcase. Alyssa Youngerman at (800) 522-7222 x208 in order to make sure that patients from Island’s beautiful Brasserie Cassis to “Spring or [email protected] for around the nation receive the most The MBIA Foundation, the charitable for a Cure,” a lovely fund raising dinner CAF and the Child Reach Foundation are more details about this wonderful event. beneficial treatment available. giving arm of MBIA Inc., has once again hosted by Dean and Joanne Kois of Reststar again joining forces to present this very (See story, page 12.) provided a grant of $10,000 to the Hospitality Group and Bob and Susan Kossin special evening, hosted by our good friends, You can’t afford to miss the start of Spring. Westchester/Rockland chapter of CAF. of Stratford Leasing Group. Gianna and Chazz Palminteri. April 9. Be there! “These programs are vitally important to the thalassemia community,” says Gina MBIA Inc. is a premier financial guarantor Brasserie Cassis, located in Plainview, is one Cioffi, Esq., CAF National Executive and a leading provider of fixed-income of the area’s hottest new dining options. Students Provide Big Helping Hand Director. “CAF thanks Novartis for their investment management services. Named to Newsday's "Top 10 New Frank Comerford generosity and foresight in supporting these Through the MBIA Foundation, Restaurants on Long Island in 2007" list, As our postal worker can tell you, big CAF Program Coordinator, and told her projects.” This year’s Cigar Smoker will again be held the company sponsors projects and Brasserie Cassis features delicious French mailings are a way of life at CAF. that their students in classes L04, V51, at the elegant Grand Havana Room, high programs that enhance the overall quality cuisine in a glorious setting. Described by Newsletters, Gala invitations, patient V52, V53 and Y02 would like to help atop Manhattan's famed 666 Fifth Avenue. of life for people in need and support the New York Times in a glowing January 20, projects that are sustainable and have 2008 review as "a beauty that evokes Belle education information, fund raising appeals, in some way. When Eileen mentioned the You do not want to miss this one-of-a-kind Board memos – it seems there’s never mailings, they said that they could provide a measurable impact on the communities Epoque Paris," Brasserie Cassis worked its evening. Call (631) 863-0532 today for where its employees live and work magic on all who gathered there to help fight a period when we’re not in some phase of the manpower we needed. more information on date, tickets, a mailing to 10 or 100 or 1,000 people. through the MBIA Foundation. thalassemia. CAF sincerely thanks Ms. Beggi, sponsorships and journal ads. It’s a lot of work – and that’s why we were Ms. Betschart and their students for helping “The chapter gratefully acknowledges “What a special evening this was,” enthused so thrilled when a students from Beach out in this way. The more hands we have this valuable grant from the MBIA Gina Cioffi, CAF National Executive Director. Channel High School (PS 233) in Rockaway, to assist with projects like these, the more Foundation and thanks Joanne Mancuso “The atmosphere and food were exquisite, NY volunteered to help us with a 7,000- we’re able to accomplish and the better and her fellow MBIA employees,” says of course, but the real reason this event was piece mailing recently. we’re able to help those with thalassemia. Peter Chieco, Westchester/Rockland such a success was because of the chapter President. “Their continued commitment of our hosts. They went above Teachers Donna Beggi and Jeannine support of our missions, programs, and and beyond the call of duty to make this Betschart contacted Eileen Scott, most of all, our patients, is greatly evening a success, and we are very grateful appreciated.” to them for their dedication.”

4 Cooley’s Anemia Foundation Cooley’s Anemia Foundation 5 philanthropy news (cont’d) OSIA Lodges Continue Their Support of CAF

The brothers and sisters of OSIA CAF Cheers (Order Sons of Italy in America) have long been among CAF’s staunchest supporters. Palminteri’s Throughout the year, lodges across the country hold a wide range of events to raise BRONX TALE awareness funds for CAF. Two of these events are the annual Dine Around and a special Evening of Popular Music, Italian Chazz Palminteri, the Academy Award- Style. nominated actor and celebrated writer who On February 12, the weather outside was has long been a devoted friend to CAF and frightful, but the attendees at the 10th annual the thalassemia community, recently Cooley’s Anemia Dine Around were all At the OSIA Dine Around completed a critically acclaimed run in his delightful. Organized by the NY Grand Lodge Kids Run to Beat Thalassemia one-man Broadway show, A BRONX TALE. of OSIA and held at Verdi’s of Westbury, leadership, vision and devotion to helping JoAnn Robertozzi, Theresa Sareo, Lorraine the snow, rain and ice didn’t keep OSIA all those with thalassemia. Ferro, Allison Scola, Dimitri Minucci, James A group of eleven children running in the members and other participants from making Adamo, Laura Monaco, Daniel Ferrari, January 12 Rock ‘n’ Roll Arizona Marathon A few nights later, on February 15, this marvelous event another big success. Christopher Macchio, Deborah Longino, in Tempe, AZ had a bigger goal than just the Centennial Lodge of OSIA held its third Dimitri Minucci and Athena Masci. crossing the finish line: they were running CAF was represented by National Executive showcase of Italian-American talent There was also a special appearance by to help fight thalassemia. Director Gina Cioffi, Esq., CAF Board to benefit CAF at Drom, New York’s multi- TRE BELLA. member Janice Cenzoprano and Program event venue that aims to showcase the best Rebecca Abraham, Joe and Gina Briones, Coordinator Eileen Scott. Ms. Cioffi praised of the authentic musical and creative Theresa Sareo performed "I Want to Feel Maggie and Lily Engel, Meghan and Hana the brothers and sisters of OSIA for their traditions of various cultures of the world. It All," a beautiful song she created Foe, Hannah Kimball, Kristen Okada, commitment to ending thalassemia, and specifically for CAF. Shivani Shrivastav and Jasmine Truong An Evening of Popular Music, Italian Style gave special thanks to New York State (Hear it at www.cooleysanemia.org/song.) ran as “CAF Kids.” They set up an online was a proud expression of New York City’s OSIA President Nancy DiFiore Quinn, OSIA fund raising page at finest Italian American artists performing The support of OSIA has been crucial in the National Vice President Joseph DiTrapani www.firstgiving.com/2008azcafkids, their own styles of music. The evening advances made in thalassemia, and it is a joy and New York State OSIA Cooley’s Anemia and asked friends and family members was hosted by comic Jenn Palumbo. to know that our patients are always in the Chairperson Josephine Palawsky and to sponsor them in the race, hoping to Participating singer/songwriters included hearts of these generous and caring people. Co-Chairperson Joan Rondinelli for their raise $1500 to donate to CAF. They must have been very persuasive; as Chazz Palminteri Top: Rebecca Abraham, Meghan Foe, Lily Engel, Maggie of this writing, they had raised over $2400! Engel , Hannah Kimball, Hana Foe, Jasmine Truong, And Chazz once again remembered CAF Kristen Okada, Shivani Shrivastav GRANT WINNERS ANNOUNCED FOR THE ‘P2 FOR Bottom: Joe & Gina Briones “This was Dad’s idea,” says Meghan Foe, during the show’s run, initiating a special age 11 and a thalassemia patient herself. offer whereby a percentage from tickets “He was inspired by Frank Somma running purchased using a special code would go to A CAUSE’ DIGITAL FILMMAKERS GRANT PROGAM in the NYC Marathon to raise funds for CAF. In addition, on January 10 a group of New York State CAF. He also got a lot of help and 50 CAF members, friends and supporters Panasonic Broadcast, Abel Cine Tech and The grant winners’ film projects include: significant life experiences of thalassemia encouragement from Alyssa Youngerman attended a performance and then were CAF have announced the five winners of the patients, their friends and families, and Time – by Stephen M. Harris (CAF’s National Fund Raiser), who patiently treated to an onstage chat with the actor- “P2 for a Cause” Digital Filmmakers Grant others whom they meet along life's journey. Continues This film is an exploration of a young man’s coached him on the fundraising process.” writer after the performance. Program. The five winners are filmmakers daily frustrations with “never having enough Silence is Not the Cure – by Rehana Mirza Stephen M. Harris, Marquette Jones, Support of CAF The marathon is set up for adults, but kids During A BRONX TALE, which Chazz time,” as compared with a person who This film will focus on members of A. Shaun Kurian, Rehana Mirza and aged 6-12 are allowed to sign up and run originally wrote and performed in 1989, has thalassemia, for whom this common communities most at risk for thalassemia, Kat Rohrer. For many years, CAF has been lucky the last mile of the course. the star plays 18 different characters in complaint is actually true. including those of South Asian, Chinese, to count the state of New York among a fictionalized tale that draws upon memories Each filmmaker will receive the use of a Southeast Asian and Middle Eastern Getting friends to join up turned out to be Knowing is Half the Battle – its supporters, and that support and incidents from his childhood in Panasonic AG-HPX500 P2 HD camcorder descent. It will highlight the importance easier than expected. “They all agreed to by Marquette Jones continues. For Fiscal Year 2008, CAF the Bronx. The New York Times called it package and $2,000 in funding to produce of bringing the subject out into the open participate as soon as I asked them,” This documentary will explain has received $40,000 from the New “a rejuvenating act of faith in the powers short films to raise awareness thalassemia. in order to help patients and find a cure. Meghan says. the importance (and simplicity) of getting York State Department of Health. of acting and storytelling. It has heart, spice, The “P2 for a Cause” Digital Filmmakers tested for the thalassemia trait and how Through the Eyes of Our Children “We are so inspired by these kids,” says and humor.” CAF thanks all those legislators who Grant Program is intended to foster activism this information can help in family planning – by Kat Rohrer Gina Cioffi, Esq., CAF National Executive recognize the important role CAF plays, CAF is thrilled that Broadway had the in the professional film and video community. decisions. To be shot from the point of view of children Director. “By putting their hearts and and especially thanks the New York opportunity to witness this marvelous This year, filmmakers were called to submit from different families – one affected by energy into this marathon, they give our A Journey of Courage and Hope: Living Conference of Italian American State performance in this insightful and compelling video treatments that drive thalassemia, one not – this film will allow the patients the courage and motivation to with Thalassemia – by A. Shaun Kurian Legislators, who are among our mesmerizing play and thanks Chazz for awareness of thalassemia. children to interact and explore each other's themselves stay healthy and compliant.” Using the images in a family photo album, staunchest allies. once again taking the time to support this film will chronicle the unique and our fight against thalassemia. (Cont’d Over)

6 Cooley’s Anemia Foundation Cooley’s Anemia Foundation 7 news (cont’d) news philanthropy (Cont’d from Previous Page) patient worlds, thus bringing about greater Kallie is an adorable understanding. “We are thrilled to have received such Meet Kathleen Durst Patient Incentive little girl. imaginative projects from these talented filmmakers,” said Gina Cioffi, Esq., National Awards Executive Director of CAF. “We express In addition to my position at CAF, I work our appreciation to Panasonic and to Twenty-eight individuals with thalassemia at NYU Silver School of Social Work as AbelCineTech for partnering with us on such who are pursuing higher education received Kallie is a lively, energetic, a field instructor. In this capacity, I am a meaningful project.” CAF Patient Incentive Awards totaling playful 4-year-old. training students to implement their social $32,500 this year. Awards are given Like every child her age, “Through this year’s Digital Filmmakers work skills. Specifically, I instruct students in memory of patients who have passed on, what she wants to be when she Grant program, we are delighted that these on cultural sensitivity skill use with diverse including Domenic Amara, Tasos Bovis, Ralph grows up changes frequently. creative and talented filmmakers will have populations. In January, we went to Africa Cazzetta, Kathy D’Amico, Donna Faiella, The future is a long way away. the opportunity to work with our P2 HD to study at The University of Ghana and Vivian Giordano-LaGreca, Jeannine Magarelli, acquisition and workflow products, to explore the African culture. It was a great Thanks to people like you, Kallie has a Thomas Mirabella, Paula Muolo, Daniel and we look forward to their films assisting experience for all of us! future – and a bright one. Advances in Pizzulli, Gina Rago, Sophie Shioshilos, the Cooley’s Anemia Foundation’s fight treatment mean children with Identifying patient care challenges and Davide Sorrenti, William Stikkel, Michelle against this disease,” said Jan Crittenden thalassemia now can grow up, have a making changes to that area has developed Torrisi and Christos Tsangaris. Livingston, Product Line Business Manager, career, and have a family. And those into an interest to me in my social work field. Panasonic Broadcast. Recipients include: advances have come about largely due Kathleen Durst What are some of the things that you enjoy Adriana Alexandrova to the contributions of the people Each grant winner will be given the use Utilizing a grant from Novartis about social work? New York University - Bachelor Degree – Film and Television reading this newsletter. of a full Panasonic P2 HD camera package - Pharmaceuticals, CAF is initiating a special Aliya Altafullah including an AG-HPX500 P2 HD camcorder, I continue to be amazed about the strengths We’ve come far. But we have a long Pilot Psychosocial Program. A Psychosocial Christopher Newport University - Bachelor – Communication Fujinon lens, four 16GB P2 Cards, people have in difficult times. I enjoy Studies/Journalism way to go and can’t afford to rest now. Program Coordinator will hold a series an AG-HPG10 P2 Gear recorder/player -- listening to all types of life stories, Sujit Bahra We have to find a way to stop all the of live and virtual meetings with patients Montgomery College of Rockville - Bachelor – Elementary and $2,000 towards production costs. developing a relationship and developing complications, such as heart and liver to discuss psychosocial issues, especially Education Abel Cine Tech is providing technical and a plan to achieve the client’s goals. Michelle Chieco failure, that affect people with those which affect compliance, and production expertise, including operational In my opinion, the relationship is the central Fairfield University College of Nursing - Bachelor – Nursing thalassemia. And we have to make sure to begin developing strategies for handling training on the HPX500, to each of the grant part of social work practice. That is the most Gina Geloso our patients are as healthy as possible psychosocial issues of concern to patients. winners. enjoyable part for me. It is through Adelphi University - Bachelor – Sociology & Elementary so they can take advantage of a Education CAF recently hired Kathleen Durst, MSW, a relationship with my clients that I am able universal cure when it arrives. One grand prize winner will be selected Help her grow to fill the Psychosocial Program Coordinator to have trust, understand their lives and Nishi Gheewala to receive an equipment/cash award valued New York University - Bachelor - English Won’t you please make the future bright position. In addition to working on the group so help. at $10,500 (including $5,000 and a P2 HD for Kallie and all those with thalassemia meetings that are the core of the pilot Nikhil Goklaney into an adorable equipment package consisting of an How do you feel about coming to work Shippensburg University - Master Degree – Business by returning the form below with a program, Kathleen will be available to speak Administration AG-HVX200 P2 HD camcorder and two for CAF? generous tax-deductible contribution? with patients and family members on an young woman. 16GB P2 cards). The grand prize-winning film I am thrilled. The energy of the staff here Mallika Kaushal individual basis. University of Michigan - Bachelor – Brain, Behavior & Cognitive will be screened at a CAF fundraising event is outstanding. I am very motivated Science; Minor, Economics You can change the future. And you can do it now. in the fall. Tell us a little bit about your background to contribute to an organization that has Katherine Koumoulos in social work and in working with health a mission like this. Panasonic Broadcast & Television Systems Fashion Institute of Technology - Bachelor – Advertising & issues. Marketing Communications YES! I want the brightest possible future for those with thalassemia. Co. is a leading supplier of broadcast and Is there anything you'd like to say to the Enclosed is my contribution of: I have been studying and working in the Ankita Sagar professional video products and systems. patients and/or families? CUNY Medical School - Bachelor – Bio-Medical Education children’s health field since 1990. I have Panasonic Broadcast is a unit company I am looking forward to meeting you all and $1000 $500 $250 $100 $75 $55 $35 Other $ ______a BS in Speech Pathology and Audiology, Pranav Saha of Panasonic Corporation of North America. hearing about your lives! I have read some University of Maryland - Master – Business Administration MA in Psychology, and MSW. I began My company matches gifts to health institutions. A matching gift form is enclosed. The company is the North American stories written by thalassemia patients and teaching children who have speech and Rucha Shah headquarters of Matsushita Electric Industrial their families; their strengths and motivation Community College of Pennsylvania - Associate - Science Name language difficulties. Specifically I taught Co., Ltd. (NYSE: MC) of Japan, and the hub are remarkable. I feel there are so many autistic and developmentally delayed Tin-Wei Sheu Address of its U.S. marketing, sales, service challenges involved in the care of Harvard Graduate School of Education - Master – Language children from age 3-12. I then developed and Literacy and R&D operations. thalassemia. It is important for the clinics City State Zip and coordinated a clinical research program www.panasonic.com/broadcast. to have staff who are emotionally sensitive Nima Tahai at Columbia University in Child Psychiatry. University of Houston - Master – Early Education Phone Email and who pay very close attention to the Abel Cine Tech Inc., New York, NY, It is a screening program that focuses needs of the patients and families. Ian Joseph Wiles established in 1989, is a Production Reseller on adolescent and teen suicide prevention. College Misericordia - Bachelor – Physical Therapy Payment Method: Check MasterCard VISA AmEx. for Panasonic DVCPRO HD & DVCPRO50 We identified youth who had depressive Is there anything else you'd like to add? Joelle Zarcone product lines. With offices in New York and Account# symptoms and then after discussing this I can’t tell you how happy I am to be part Loyola Marymount University - Bachelor Degree – English, Burbank, CA, Abel Cine Tech is recognized History & Political Science with their parents, helped the family obtain of a program like this. I will be able to work Signature Exp. Date as one of the most comprehensive services. Out of that program I developed with the clients as well as (hopefully) make CAF congratulates all of the recipients and and knowledgeable sources for HD, DV Please make your check payable to the COOLEY’S ANEMIA FOUNDATION, INC. and directed a parent education and support changes in care. So it is an ideal situation. wishes them well in their studies. and film equipment in the US. The Cooley’s Anemia Foundation is a 501(c)(3) non-profit organization and donations are tax deductible to the extent provided by law. program for parents of children receiving Contact Kathleen: (800) 522-7222 or www.abelcine.com. Cooley's Anemia Foundation, 330 Seventh Avenue, #900 New York, NY 10001 (800) 522-7222 services for emotional health issues. [email protected].

8 Cooley’s Anemia Foundation Cooley’s Anemia Foundation 9 patient news (cont’d) Patient Profile Thalassemia TAG Treatment Centers Lisa Giudice Patient/Family Lisa Giudice is a thalassemia patient living Weill College of Cornell University Conference * in New Jersey. CAF talks with her a little Dir: Patricia Giardina, MD Children’s Hospital & Research Center at Oakland about her life, and about how she works Set for May * Contact: Dorothy Kleinert, (212) 746-3404 Dir: Elliott Vichinsky, MD with her husband, NJ Masonic Blood Contact: Dru Foote, (510) 428-3347 Program State Chair Robert Giudice, to help increase blood donations * Children’s Memorial Hospital, Chicago in her state. Dir: Alexis Thompson, MD How old were you when you were Contact: Janice Beatty, (773) 880-4618 diagnosed with thalassemia? How often are you transfused? Lisa Giudice I was diagnosed when I was 6 months old, and I get transfused every 3 weeks. Tell us about how you first met. The Thalassemia Action Group (TAG), I receive 1 unit if my hemoglobin is 10 Robby and I met at an 8 Minute Dating CAF’s patient-run support group, has set its Children’s Medical Center Dallas * Children’s Hospital of Philadelphia or above, and 2 units if I am below 10. event. The next night, we were talking 22nd annual Patient/Family Conference for Dir: CHarles Quinn, MD Dir: Alan Cohen, MD At what hospital do you receive your on the phone and setting up our first date, May 9-11 at the Hilton Crystal City Hotel Contact: Deborah Boger,, (214) 456-6102 Contact: Marie Martin, (215) 590-2197 transfusions? Who is your hematologist? and I just came out and told him that in Washington, DC. Children’s Hospital Boston I was born with a blood disease called I go to Morristown Memorial Hospital in “We have a full weekend planned for you,” * thalassemia major, and explained what Dir: Ellis Neufeld, MD Morristown, NJ, and see Dr. Gary Gerstein. says TAG President Jesal Kapasi. Contact: Jennifer Braunstein, (617) 355-2457 that’s about: that I have to go for blood “We start with something new this year: New Patients: Michelle Burnett, (617) 355-8246 What kind of an impact (if any) do you feel transfusions every 3 weeks, that I have Children’s Hospital Los Angeles a Legislative Day on May 9th, 2008 (World * thalassemia has on your life? to sleep with a needle in my stomach for Dir: Thomas Coates, MD Thalassemia Day). The goal is to get people 8 hours a night (because I was on Desferal Contact: Susan Carson, (323) 361-4132 I handle having thalassemia major very well; together and make our issues and concerns then) that I am a diabetic, and that I have it is all I know. It doesn’t stop me; heard by our government representatives. a heart problem – the whole thing. When I I feel my life is precious and do not take After that, we have our Friday night mixer, was done, he just said, “Yeah? So what’s Texas Children’s Hospital (Houston) things for granted. where everyone just hangs out together, old the problem?” I said, “Nothing.” So we friends catch up or new relationships are Dir: Brigitta Mueller, MD Aside from a cure, what issue or area planned our first date and now here we are! Contact: Roz Bryant,, (832) 822-4242 do you wish there were more studies on, started.” How do you feel about Robert’s efforts to Children’s Healthcare of Atlanta or more information available about? “Saturday is the day of the Conference,” * increase blood donations in New Jersey? These Thalassemia Treatment Centers are equipped to Dir: Jeanne Boudreaux MD I wish more people knew what thalassemia Jesal continues, “and you will get to hear address the multiple concerns of thalassemia patients, Contact: Jennifer Hughes, (404) 785-3614 was, the way they know about cancer It is great that he is so involved and that health related information and new medical including annual comprehensive care evaluations. They are or AIDS. Greater awareness, having I motivate him to help others like myself! advancements from the premier doctors also happy to work with your current hematologist someone famous like Oprah Winfrey talk Can you tell us a little about the role that in the thalassemia field. And CAF is to help coordinate your care. Call today to set up your appointment! about thalassemia, would make a big you play in the blood drives? sponsoring a Saturday night Dinner Dance In addition, there are a number of thalassemia treatment difference. I would love to go on Oprah at the hotel as wonderful way to cap off the Centers marked with an have been selected to receive funding from the I help during the set up, and I talk to people centers which are associated with the centers listed above. and speak out about it, educate people entire event. Centers for Disease Contr*ol and Prevention for a specific thalassemia initiative. about what thalassemia is and what I go Contact CAF at (800) 522-7222 for a list of these centers. about it. through, and thank them for donating their TAG has an arrangement with the Hilton for You are very skilled at designing jewelry. blood. I also handwrite every single thank a special discounted rate of $109 (plus tax) You Can Help Keep the Blood Supply Safe Tell us a little about that. you note to the donors. per night. To receive that rate, please mention the Thalassemia Action Group My grandfather started our family business What else do you want to tell us about As a person with thalassemia, you know The seven Thalassemia Treatment Centers All you have to do is visit one of the Conference when making a reservation 60 years ago this May. As a child after yourself? better than anyone else the importance who receive funding from the CDC for this seven Thalassemia Treatment Centers school, I would go to him and he would and make sure that your reservation is made That I am normal like everyone else. of maintaining a safe blood supply. program are annually collecting a sample participating in the program at least once teach me small jewelry repair, as well as by April 15. CAF is vigilant about making sure that of blood from thalassemia intermedia a year. (This can be at your annual I work full time, I am married, I have watch repair. After high school, I went to “Please come out and join us for good adequate governmental safeguards are and major patients who wish to participate comprehensive care visit.) Fill out a brief 5 tattoos - I live my life to the fullest! the Gemological Institute of America in information, great companionship and to just in place, but there’s a simple way that you in the program. That blood is “banked” and questionnaire and give a small amount New York City, where I took colored gem Is there anything you want to say to other make your voice heard," Jesal says. yourself can help in the monitoring of is used to help in the speedier identification of blood. All of this is treated confidentially. stones and diamond classes. people with thalassemia? “We hope to see you there so that we can possible infectious agents: become part of of and response to emerging blood borne I love doing this; it's a happy business. For more details, contact CAF at Enjoy life; live it to the fullest. You only all talk with one voice and make ourselves the Thalassemia Data and Blood Specimen threats, which helps to prevent the spread (800) 522-7222 or one of the participating How long have you and Robert been have one life to live, so make it the best. heard.” Collection System (often referred to as the of disease to other thalassemia patients Thalassemia Treatment Centers. married? Remember, things could be worse. Blood Safety and Surveillance Program). (or anyone needing blood products). For more information, email Do the right thing, chelate and go for October will be 5 years. [email protected]. transfusions, STAY POSITIVE!

10 Cooley’s Anemia Foundation Cooley’s Anemia Foundation 11 12 Exper for someonewiththalassemia? What doyouthinkareCHO'sbestqualities and JacqMadden. Zahra Pakbaz,LisaCavelli,MattHerz, Sweeters, ClaireSaenz,EllenFung, Our researchteamincludesNancy support) aremembersoftheclinicalteam. (social work)andDonnaEdwards(clinical Eve Alley(outreach),JeanMarieKnundsen Elliott Vichinsky, AshLal,Titi Singer, program? Who arethekeyplayersinthalassemia satellites About 250atCHO;400includingallour CHO? How manythalassemiapatientsarewith 13 years Oakland (CHO)? Thalassemia CenteratChildren’s Hospital N How longhaveyoubeenwiththe C & ResearchCenteratOakland Dru Foote, Children’s Hospital mile. W Caring -Theteamreallydoesgotheextra in thefuture. pursuing r knowledgeable aboutthalassemiaandare and research.Dr. LalandDr. Singer arealso a leaderinthalassemiaclinicalcare and lear patients togethersothattheycansupport issues andtr families withschool,workorinsurance as possible.Inaddition,westrivetoassist of ourpatientsandtheirfamiliesasquickly ar Comprehensive -Ourgoalistoensurewe and patientscanhavesomefun. Cutting Edge-AtCHOwear thalassemia mayaf all cur sure thatwehavethoroughly evaluated physical body is thebestavailable. W to ensurethatthe carepatientsreceive of the thalassemia unit at Children’s Hospital Children’s at unit thalassemia the of to or Oakland. orthern California Comprehensive orthern California AF interviews Dru Foote, RN, the PNP PNP the RN, Foote, Dru interviews AF e tr medical eating the"wholeperson"notjust ganize activitieswher tise -Dr rent andpotentialareaswhere e tr n fr esear y tober om eachother. We alsotry y toconnectfamiliesand , butwealsowanttomake . Vichinsky as isrecognized ch thatwillimpr fect theperson’ Cooley’ esponsive totheneeds e dothisbystaying s Anemia Foundation Pre families ofile e alwaystr ove car news s health. e ying WWF (justkidding).IlikePr patients? pr What doyouliketowatchthatwould and KennyG. Pachibel's CanoninDMajor, Motown, Jones, Mar This isgoingtosodateme.IlikeNorah Who are3ofyourfavoritemusicalacts? Historical andmodernfiction. ______." patients' charts,Imostliketoread Finish thissentence:"WhenI'mnotr the careyouarereceiving. recommendations andyourfeedbackabout your health,opinionaboutour to whatyouhavesayaboutyourself, you aretheexpertonyou.Iwanttolisten I mayknowalotaboutthalassemia,but that be? to knowonethingaboutyou,whatwould If youwantedanewthalassemiapatient working withthesameinformation. the bestpossiblecareweallneedtobe are ateamandforthepatienttoreceive be. Thepatientandthehealthcareteam medications maybechangedthatshouldn't know whatpeopleareactuallydoing, medications orusetheirinsulin.Ifwedon't use theirchelatorortakecardiac own care.Likehowmanytimestheytruly What theyarehonestlydoingabouttheir NOT giveyouthatwishtheywould? What informationdopatientsusually o all ourpatientsenjoythehighestquality advance inthalassemiacaretoensurethat t GI). Andwehaveaveryactiveresearch as wellotherspecialties(likecardiacor c interfere withyour abilitytoenjoylifetoday. Don't letthefearofwhatmight happen Anything elseforpatients/par ago. and Ultimatumwithmysonafew weeks I watchedtheBour What wasthelastgoodmovieyousaw? eam whichistryingtodeterminethenext urrent withtheliteratureinthalassemia f life. obably comeasasurprisetoyour oon Five,DaveMatthews, ne Identity oject Runway , Supr ents? emacy eading . fr care, inordertomakesurethatpatients most uptodateinfor doctors andhealthcareproviderswiththe CAF’s goalwith theCMEistoprovide thalassemia fieldfromacrossthecountry. include manyoftheleadingexper Manager, EvaChin-Li.Thespeakers Dir College, andCAF’ Patricia J.Giardina,MD,ofWeill Medical The seminarhasbeenplannedby Phar an unrestrictedgrantfromNovartis convention. Theseminarisfundedby Society ofPediatricHematology/Oncology to coincidewiththeannualAmerican seminar onMay13inCincinnati, Therapies” ContinuingMedicalEducation Update: CurrentManagementandFuture presenting the“5thAnnualThalassemia C CAF, incollaborationwithWeill Medical in Cincinnati to BeHeld CME Seminar Thalassemia or [email protected] Eva at(800)522-7222 in attendingthisseminarshouldcontact Any healthcareprofessionalsinterested a differenceinpatientoutcomes.” current informationthatcanmake makes surethatthesedoctorsreceive care,” saidEvaChin-Li.“TheCMEseminar inordertoprovidethebest different areas need awealthofinformationinmany “Doctors treatingthalassemiapatients beneficial tr In Memoriam om ar ollege ofCornellUniversity, willbe ector, GinaCioffi,andPatientServices macueticals. We reportthelossof regretfully ound thenationr to theirfriends and families. and extendour sympathies Kathy Hatzinas Cooley’ V eatment available. incent Lau s anemiapatients s NationalExecutive mation onthalassemia eceive themost g. ts inthe Blood Donors on FirstTime Study Focuses par prevention ofsuchreactionsmaybea predictors ofattritioninnovicedonors, lightheadedness) isoneofthestr reactions (e.g.,dizziness,weakness, Because theexperienceofvasovagal donors willeverprovideaseconddonation. Unfortunately, lessthanhalfofallnovice new recruitswouldbecomelifelongdonors. ongoing r the increasingdemandforbloodis A crucialcomponentoftheefforttomeet tell usalittleaboutthisstudy? reactions innoviceblooddonors."Canyou grant tostudy"Preventionofadverse CAF: You areworkingonanNIH-funded people makingtheirfirstblooddonations. a studytopreventadversereactionsin psychology atOhioUniversity, isworkingon Christopher France,PhD,aprofessorof standard donation. compared toparticipantswho provide a return toprovideanewdonation as adverse reactionsandwillbemore likelyto active treatmentgroupswillexperience less We hypothesizethatparticipantsinthe during atwo-yearfollow-upperiod. Subsequent donationhistorywillbetracked water loadingandappliedmuscletension. water loadingalone,oracombinationof randomly assignedtoeithernointervention, donation behaviorin400first-timedonors reactions toblooddonationandrepeat muscle tension.W strategies –acutewaterloadingandapplied particularly promisingvasovagalprevention evaluate thecombinedef The specificaimofthecurrentgrantisto enhance donorr be usedtopreventvasovagalreactionsand simple andinexpensivestrategiesthatcan pr long-term objectiveofourresearchisto enhancing thenation’s bloodsupply. The ovide bloodcollectionagencieswith ticularly ef ecruitment ofnewdonors.Ideally, ficient andenduringmethodof etention. e willcomparevasovagal fects oftwo ongest Ir pumps). output (CO–theamountofbloodhear major: ironloadandincreasedcardiac shown toimpr with theauthorsstatingthatthis has“been deferoxamine infusionisalsorecommended, administered.” Continuous(24-hour) additive effectwhencombined treatmentis isat leastan different poolsandthere “each ofthosetwoagentschelateironfrom deferiprone astheirfirstchoice,statingthat combination therapywithdeferoxamineand the authorsofstudyrecommend identified ashavingcongestiveheartfailure, For thalassemiapatientswhohavebeen cardiac outputsignificantly. iron and/orhepatitis,canalsoincrease be foundinsomepatientsduetohighliver to cardiacdysfunction.Cirrhosis,whichcan to workfaster, addingtostressandleading Increased cardiacoutputcausestheheart arrhythmia. cardiac failure)andthedevelopmentof leads tothedevelopmentofcongestive for ventricular (LV) function,aswellinthe car T of themainpointsinar Following isaverybriefsummaryofsome www.blackwell-synergy.com.) Tsironi, isavailableforfreeonlineat Aessopos, Vasilios BerdoukasandMaria (The fullarticle,authoredbyAthanassios overview ofcardiacissuesinthalassemia. and management,”providesaverygood thalassemia today–prediction,prevention transfusion dependenthomozygous Haematology, entitled“Theheartin recent reviewintheEuropeanJournalof outcome, amongpeoplewiththalassemia.A o CAF isconcernedaboutthehighincidence Thalassemia Problems in Reviews Cardiac Journal Article wo competingfactorsbasicallyaf on overloadr f cardiac-relatedillness,oftenwithafatal mation offr diac str uctur ee radicals(whichintur ove car esults inadecr e andfunctioninthalassemia diac functionand ticle. ease ofleft fect n t Cooley’s Anemia Foundation H t removal isslowerthanwithcombination salvage patients”althoughtherateofiron monotherapy intermsofcardiacissues. combination therapyanddefer conducting atrialexaminingboth Thalassemia ClinicalResearchNetworkis In addition,thefederally-funded necessar for patientswhomitsuseisconsidered Investigational NewDrug(IND)designation is cur Dr has notyetbeenreviewedbytheFoodand available intheU.S.,duetofactthatit originated, deferiproneisnotgenerally Unlike inEurope,wherethisstudy combination therapyforallsuchpatients. dysfunction, andtheauthorsr at ver ir below 15ms.Patientswithsever r chelation therapy, withcombinationtherapy should benefitfromanadjustmentintheir indicate moderatecardiacironloading readings). PatientswhoseT2*readings (which measurescardiacironviaT2* of cardiacmagneticresonanceimaging Therefore, theauthorsencourageuse cardiac diseaseinthalassemia. to makeaccuratepredictionsofpossible by provide enoughinformation themselves echocardiograms, whilevaluable,donot on toreflectcardiaciron,and ferritin andliverironlevelscannotberelied as regularechocardiograms.However, liver ironlevelsonaregularbasis,aswell authors recommendmonitoringferritinand In termsofpredictingheartdisease,the prescribed andfollowed. a at areasonablelevel,and(2)that level onacontinuingbasistokeeptheCO h means (1)ensuringthatpre-transfusion preferable totreatingit.Inthalassemia,this herapy. ecommended forthosewithT2*values ppropriate ironchelationtherapiesare emoglobin levelsarekeptatasufficient on loading(T2*<10ms)ar owever, diseaseis preventingheart ug Administration.However, deferiprone r y highriskofdevelopingcar ently availableunderaT y . e consider ecommend r oxamine eatment e car diac diac ed 13 medicalchapter newsnewsnews (cont’d) board news

and a barbecue lunch starts at 11:00 a.m., with (Cover Story Cont’d) a shotgun start at 1:00 p.m. Dinner follows Wagner Students CAF Speaks with at 6:00. The cost is $185 per person; for cocktails largest source of funding over the years. and dinner only, the cost is $100. There will also Break Blood President-To-Be But we’ve also developed relationships with be a 50/50 raffle, as well as a Hole-in-One AHEPA, with the Elks, that we haven’t had Contest, a Putting Contest, performance prizes before. and door prizes. For information, contact Drive Record Robert Aiello at 718-369-3434. What is your fondest memory from your If poker is more your game than golf, the chapter Long Island/Brooklyn Chapter Tony Viola will become the next President term? also has something for you on April 30 - a Texas of CAF on April 26. CAF spoke with him My absolute fondest memory is Alicia Lots of upcoming activities for the Long Island/ Hold'Em tournament at the Hillside Swim Club, and I counseling a young family over Brooklyn chapter, including a “Where is the Cure” hosted by the Gateway Rotary Club for the briefly about his plans for the future. Spring Brunch on March 30 at Milleridge Cottage benefit of Cooley's anemia. the telephone who had just had a child How do you feel about becoming CAF in Hicksville; a Bowling Night in May at Maple diagnosed with thalassemia and were in as On May 7, the chapter will hold a Community President? Lanes in Brooklyn; a Golf Outing May 19 Outreach Evening from 7:00 – 10:00 p.m. at the dark a place as parents could be. I feel extremely honored to become at Wheatley Country Club in East Williston; Staaten Caterers. Last year's event attracted We left them more hopeful and better off a blood drive in June; a Casino Night in July; President of such a distinguished 100 members from the community, including than they were when they started. a Wine Tasting/Cigar Event in August; medical professionals and business leaders, organization. Although CAF does not a Bike-a-thon in September; and our Gift of Life That about embodies everything I feel about to listen to a presentation about Cooley's anemia. possess the financial resources of some Ball on November 8. Plan now to attend! this Foundation. It’s what we do. Information: 718-761-5380 bigger foundations, the impact CAF has had The chapter meets the first Tuesday of every Two days before Valentine’s Day, students on providing patients with the best possible Tony Viola Are there any people you would like month. Join us! Suffolk Chapter at Susan E. Wagner High School in Staten care and the best possible means for an to thank? Information: Liz Nunzio, Island, NY demonstrated just how big their eventual cure cannot be overstated. financial infrastructure to allow CAF to Generally, every patient who’s ever been (917) 402-5041 or [email protected]. On the last Monday in January the Suffolk chapter held its 5th Annual Indoor Putting Contest hearts are by donating blood in a special I also feel extremely honored to follow our provide our patients with the best affordable open and told me what we needed to do Queens Chapter and Luncheon. Butterfield’s Restaurant Cooley’s anemia blood drive – and broke dedicated past presidents, especially care and to fund invaluable research. to be better, or thanked me for things in Hauppauge closed its doors for the afternoon a record in the process. Frank Somma, who went above and beyond What are some of the goals you want CAF we’ve done better. The Queens chapter held its annual Good Friday and 80 people participated in trying to hit that by serving this position for almost 10 years. Dinner Dance on March 21 at Russo’s on the Bay little white ball into the cup from 30 feet away. Students Steven Gilberto and Meagan Font to accomplish while you are President? More than anyone, I thank my wife. in Howard Beach. This is one of the chapter’s headed up the enormously successful effort, On Super Bowl Sunday, friends gathered at Can you tell our readers a little about your Every President's goal is to find a cure for With all the hours that I’ve spent with CAF, signature events, and a large crowd gathered to Café La Strada to watch the big event. resulting in the collection of 165 units past involvement with CAF? this horrible disease, but I believe that we it’s a wonder she can recognize me. honor Joe Connolly, President of Local 1101 Steven Bua, the owner of the restaurant, held of blood – which is the largest amount ever of the Communications Workers of America, My original involvement in the Foundation as an organization need to set short term She gave up an awful lot of me. a private party for Suffolk CAF members. as well as to celebrate and have a great time. collected at a blood drive at a school in was due to my cousins, Nunzio and Ralph and long term goals. He provided food and beverages, and we raffled I thank all volunteers. And definitely Information: 718-746-7677 Staten Island. In all, more than 180 people Cazzetta, both of whom have passed on, off a 42” plasma TV. My short term goals include the the Executive Committee, filled with people turned out to make a donation. succumbing to complications relating to Rochester Chapter Mickey B. will host a Golden Oldies Evening establishment of a fundraising plan that who have given their entire lives to CAF, Cooley's anemia. While I was aware of their for Cooley’s anemia on February 23, 2008 at the Steven, a member of Wagner’s Falcons will benefit CAF for years to come. for their wisdom and insight. At the risk Join the Rochester chapter for its weekly Bingo sicknesses as a child, I did not fully Patchogue Theater. Special guests include football team, and Meagan, a member of For too long, the bulk of fundraising dollars of singling somebody out, I need to give night every Monday at the Empire Bingo Hall, The Duprees and Shirley Alston Reeves, former understand their difficulties in living with the school’s Student Organization, put have come from a small percentage special thanks to Peter Chieco, who was my 360 Empire Blvd. Information: 716-482-5587 lead singer with the Shirrelles. Also performing Cooley's anemia until I became an adult. a tremendous amount of effort into this of CAF's base. We need to expand our strongest adviser. will be Charlie Thomas’ Drifters, Lenny Dell’s Over time, my participation grew as Staten Island Chapter drive. Their skills and talent were very much volunteer fundraising base and to explore Dimensions, The Eternals, Stan Zizka’s Del No matter what I’ve done in 30 years in my Satins, and Somewhere in Time. This is a sold-out on display at every step of the way, and their I volunteered for more activities in support of Valentine’s Day was a little early on Staten Island, alternative areas of support that will alleviate performance. CAF. I eventually became a member of the career, every time I come home from a CAF as the annual “Let Your Heart Dance” was held motivation was increased by their desire this reliance on such a small group. We also Board of Directors and the Executive meeting or event, I look at my wife and say, on February 9 at the Staten Island Hilton. Information: 631-863-0532 to do something to help people born with need to develop a plan of succession for Committee. In 2004, I became National Vice “THIS is the best of what I do.” And I really A packed crowd once again delighted to one of Cooley’s anemia. long time volunteers that are no longer able President, stepping up my participation upon mean that. the loveliest evenings around. As usual, there Westchester-Rockland Chapter to fully participate as they have for many was a cocktail hour that featured a wide range Blood Services of Brooklyn and Staten the passing of my cousin Ralph, who I was The Westchester/Rockland chapter is holding years by expanding the volunteer base I’m also thankful that my being President of delicious foods – practically enough to make Island managed the blood drive and also extremely close to and who I admired a meal all by itself. But no one who has been to its annual Night at the Races on Saturday, to include younger members that may have has had a “legacy factor.” My daughter provided gift cards to Subway Sandwiches tremendously. My participation in the this event before would do that, because they April 12 at the V.I.P. Country Club in New business backgrounds. This would be Christine is now President of the NJ for participants. In addition, Life Quality Foundation initially related to my cousins' know that the actual dinner itself is even better. Rochelle. Experience thoroughbred horse racing helpful in operating CAF efficiently for chapter. My daughter Alicia has spoken the way it was meant to be – competitive, Motor Sales generously donated t-shirts illnesses but now is driven by my desire to In between courses, there was dancing galore, years to come. about Cooley's anemia to hundreds of along with a number of special raffles, all adding exciting, fast and fun…all within the comfort of for all those who gave blood. try and make a difference in helping patients the elegant V.I.P. Country Club. Run for the roses people at many meetings. I think that is the up to a truly wonderful evening. live long and normal lives, while seeking an My long term goals include the continuous with video horse racing, betting tables, fabulous Special thanks are also due to Pat Kane, best take away I have from my 9 years. A few days later, we had a very successful blood raffle prizes and amazing auction items. coordinator of student affairs, and Coach eventual cure. funding of the best research to not only find drive at Wagner High School (see separate story). Admission is $75 per person, and includes a cure, but to continuously explore whether Anything for our patients and families? Al Paturzo for their assistance in making What are some of the things you’re most March 9 was our excursion to Atlantic City’s an open bar and buffet dinner. our patients are benefiting from the most the blood drive possible. looking forward to as President? Live normally. Have thalassemia, but don’t Showboat Casino, and we’re following that up Information: 914-779-7554 or effective drugs available and to identify be a thalassemic. Love life. Be involved. on March 28 with an After Hours event, co-hosted [email protected]. Gina Cioffi, Esq., National Executive Director I look forward to working with the other the most pressing issues for patients Wear your pump and be healthy, so you’re with the Staten Island Chamber of Commerce of CAF, says, “Our deepest thanks and dedicated volunteers of the organization, The chapter utilized a program of Bronxville’s Blue as they live longer and healthier lives. in line for a cure. Most of all, NEVER lose and Brooklyn/Staten Island Blood Services. Moon Mexican Café to raise funds on March 4. appreciation go to all those who made this along with our medical and legislative This will be held at the College of Staten Island hope. And if you feel like you’re losing hope Under this program, CAF sent supporters special drive such an overwhelming success, advocates, to try and make our patients' I am dedicated to keeping CAF in a position from 5:00 to 7:00 p.m. flyers. For those diners who presented the flyers or it’s all crashing down, call me. My cell and especially to Steven and Meagan. lives more comfortable with the best to most effectively see to the needs of Golf enthusiasts will want to mark April 30 on the on March 4, 20% of their bill was donated to CAF. the community. I promise that I will do is (732) 822-5990. We had a nice turn-out, and thank CAF’s friends It is inspiring to see so many people roll up possible care, while seeking a cure. Since calendar, as that’s the date of our 4th Annual Golf whatever it takes to accomplish the goals Outing at South Shore Country Club. Registration in the area for supporting us. their sleeves to help people with Cooley’s I have a background as an accountant, I am anemia, and everyone who needs blood.” determined to continue to create a strong of CAF in caring for our patients.

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