The Daniella Maria Arturi Foundation would like to covey our most sincere thanks to all for your dedication to DBA and for attending the 12th Diamond Blackfan Anemia International Consensus Conference of 2012.
We were thrilled to kick off DBA ICC 2012 in the Vault Room of Bobby Van’s Steakhouse & Grill’s newest location across from the New York Stock Exchange!
A wonderful evening was shared by all as we were “Welcomed” back to New York from DMAF Executive Director Marie Arturi. We were delighted to have Jessica and Jeff Bond, parents of Angus Bond representing Captain Courageous, Australia. As our keynote speaker for the evening, Jeff Bond’s remarks focused on the hope and inspiration they as parents felt seeing the room filled with so many clinicians, scientists, and public health and research officials dedicated to finding a cure for DBA.
Click & ‘flow” through the Buncee to view photos and active links from the evening
A bit of history about the fabulous ‘Vault Room’!
In 1969, Bobby Van’s began in Bridgehampton, NY and is renowned for catering to the likes of Truman Capote and other literary giants. Bobby Van’s became so popular; Leona Helmsley personally swayed the owners to open their first of four Manhattan locations in 1996.
The Vault, where our dinner took place was once JP Morgan’s vault! The Vault was the first and largest safety deposit box repository rivaled only by one vault in Seattle. The Vault once held 8000 copper safety deposit boxes and the Vault door that you go through to enter weighs 5 tons!
From March 12-14, blood disorder public health professionals and advocates from around the country gathered to take
part in the Center for Disease Control & Prevention’s 2nd National Conference on Blood Disorders in Public Health inAtlanta. The conference focus,From Outcomes to Impact: Addressing Translational Blocks to Improving the Public’s
Health—Disseminating and Improving the Adoption of Effective Preventive Measures and Therapeutic Interventions” included scientific sessions and workshops covering a broad range of blood disorder communities.
The team from the Steven and Alexandra Cohen Children’s Medical Center of New York presented several scientific sessions concerning Diamond Blackfan Anemia. Dr. Jeffrey Lipton, Chief of Hematology/Oncology and Stem Cell Transplantation at Cohen Children’s Medical Center was a Plenary Speaker for the March 13 Plenary II onPublic Health Approaches To Increasing The Recognition Of Rare Blood Disorders, addressing the topic of, Registries and Data Collection Systems for Rare Blood Disorders. Dr. Lipton also presented on DBA and its broad public health impact in the session on Pediatric Issues In Blood Disorders. Dr. Adrianna Vlachos, Head, Bone Marrow Failure Program, Assistant Prof of Pediatrics, Cohen Children’s Medical Center, and Dr. Johnson Liu, Associate Professor, Department of Pediatrics, Division of Pediatric Cohen Children’s Medical Center, also participated in the session on Frontline Perspectives Around Blood Disorders, with Dr. Vlachos presenting her abstract on Cancer Surveillance Defines Diamond Blackfan Anemia (DBA) As a Cancer Predisposition Syndrome and Dr. Johnson Liu presenting on his abstract Transitioning the Diamond Blackfan Anemia Patient From Pediatric to Adult Care.
Dr. George Buchanan, University of Texas Southwestern Children’s Cancer Fund Distinguished Chair in Pediatric Oncology and Hematology Director, was also a featured Plenary Speaker addressing Current Workforce Issues, Historical and Present Challenges, Barriers and Efforts to Overcome Them in the conference’s Closing Plenary.
It was a highly successful conference demonstrating the public health needs of the DBA community, the tremendous strides that are being made and the broad public health impact that will result with the improved understanding of the DBA and bone marrow failure
patient population including methods for improving each patient’s quality of life
The Daniella Foundation was proud to have the honor of presenting Dr. Adrianna Vlachos with the award for Best Abstract, Epidemiology for the abstract, Cancer Surveillance Defines Diamond Blackfan Anemia (DBA) As a Cancer Predisposition Syndrome Adrianna Vlachos, MD; Philip S. Rosenberg PhD; Eva Atsidaftos MA; Blanche P. Alter MD, MPH; Jeffrey M. Lipton MD, Ph. at the two-day CDC National Conference on Blood Disorders in Public Health March 12-14, 2012!
Congratulations Dr. Vlachos!
Dearest DBA colleagues,
The Daniella Foundation has been proud to host the DBA booth in not-for-profit row at The Annual American Society of Hematology Meeting and Exposition over the last six years. The recognition ASH paid to DBA last year was deeply humbling and something we will be eternally grateful for.
Each year, participating in the ASH Expo has given us the opportunity to learn about new advancements in the world of hematology while also helping to share each of your latest DBA research and therapy advancements to a global audience. We’ve been privileged to connect with colleagues and interact with leaders in the field that we might not have otherwise been able to achieve if it were not for this remarkable meeting.
This year, in an effort to share resources, DMAF has coordinated with the DBA Foundation to manage the DBA booth at ASH, Dec. 8 – 11 in Atlanta, GA. We hope each of you will stop by the booth and say hello to the DBA Foundation from all of us at the Daniella Foundation.
Thank you again on behalf of the Daniella Foundation and the DBA community as a whole for your tireless work! We’ll look forward to seeing you all very soon! Please know that our hearts are with you in Atlanta.
Our Warmest regards,
As you know, buncee was inspired by Marie’s desire for a more flexible and creative way to send thank you’s, updates and follow-up’s to all of you, our great family of researchers and supporters. It’s the Foundation’s hope that by building an easy, fun and interactive way for people worldwide to share their memories, interests, causes, greetings and more, buncee will become a platform used by millions and in turn help generate millions to fund all your great efforts to find a cure for DBA!
We’re excited to report that buncee has received lots of great upgrades over the last few months! It’s now easier than ever to make a buncee and even more improvements are on the way! So, stay in touch with loved ones this holiday season by using buncee.com to create personalized greetings, share unlimited photos, video, messages and more.
Remember to download buncee’s mobile app for iPhone and iPad, buncee bits , too! We’re proud to say that buncee bits continues to be frequently featured on iTunes What’s Hot list! It’s free & every time you buncee, you’re doing good by helping us reach our goals for DBA!
Spread the word and have fun!
Need to buy something REALLY SPECIAL for the political junkie in your life ?
Take a look at this book we are auctioning at Bidding For Good for the Daniella Maria Arturi Foundation in an effort to help find a cure for DBA.
Now’s your chance to own a piece of history and support a good cause, all at once!
President Obama, VP Biden, and hundreds of Congressional members autographs from all over the political spectrum! All in one spot…ALL for a cure!
Signed by over 200 Members of Congress from both sides of the political aisle including President Obama, and Vice President Biden, this popular Capitol Hill children’s book,House Mouse Senate Mouse, has been transformed into a truly unique one-of-a-kind piece of history! Proceeds from the book’s auction will go toward the Daniella Foundation’s DBA medical research initiatives, which are yielding important clues into bone marrow failure disorders, birth defects, cancer and other widespread disease areas!
What is so special about this item is that Congresswoman Carolyn McCarthy of Long Island, NY has found a way to utilize this popular Capitol Hill children’s book as a memorable and effective educational tool for Diamond Blackfan Anemia (DBA). Written and Illustrated by husband and wife team, Peter W. Barnes and Cheryl Shaw Barnes, House Mouse Senate Mouse tells the story of how a congressional bill becomes law in a clever and fun way for children. The Congresswoman has added a brief explanation of DBA and the need for research support for this rare, but complex disorder to the book, and carries it with her around the Halls of Congress throughout the year, including the Presidential State of the Union, to ensure as many Members of Congress as possible sign the book and learn about DBA. This special book has been filled with hundreds of signatures from political leaders from around the country and both sides of the political aisle, making it one of the most unique examples of political memorabilia and a great piece of history for anyone to treasure!
We hope you will show your support by checking out the Daniella Foundation online auction and placing a bid on this clever, fun and truly ONE-OF-A-KIND piece of history.
For more pictures and to place your bid visit www.biddingforgood.com/DMAF
The Daniella Maria Arturi Foundation (Daniella Foundation) was founded by Manny and Marie Arturi after the loss of their daughter, Daniella, who was afflicted with the rare blood disorder Diamond Blackfan Anemia (DBA). Unable to produce enough red blood cells, DBA patients suffer from severe anemia, carry a predisposition to cancer, and more than 50% of children are born with congenital birth defects. Manny and Marie created the foundation to try to improve the circumstances for children and families facing DBA by improving the DBA clinical care environment, advancing family and physician access to DBA information and stimulating scientific research to improve treatment options and someday, find a cure for DBA. We hope you’ll check out this truly unique Auction item in support of the Daniella Foundation’s goals!
Thank you & Happy Holidays!
The Daniella Maria Arturi Foundation
What do James Taylor and The Beatles have in common with the Head of the National Institute of Health? Quite a bit, I recently found out when I was hired by legendary financier and philanthropist Michael Milken as Musical Director for a concert during the Celebration of Science, a major event in Washington, D.C.
The Celebration was a three-day gathering of the world’s most brilliant and influential medical researchers and public officials, members of Congress and heads of universities. In panels and talks, they gathered to share ideas and deliver the message that America should recommit itself to bioscience. On the Saturday night of the Celebration, there would be a Kennedy Center event featuring patient stories, talks by political leaders and performances by Kenny Edmonds, Stevie Nicks and Melissa Manchester.
I would arrange, conduct and produce the music for the live event and the subsequent TV broadcast. At an early meeting Mike told me his idea (every show Milken produces — whether it be for the Prostate Cancer Foundation, the Milken Educator Awards or FasterCures — is centered on one of Mike’s “ideas”): “So many of these amazing doctors are musicians,” he said, “I want you to put together a band of doctors.” Just because a doctor can map the Human Genome, doesn’t mean he can play the guitar well enough to perform in front of 1,000 people, not to mention a televised audience of millions. (Conversely, I don’t think anyone would want me to take out an appendix.) Instinctively I started to say to Mike, “But what if…” Mike smiled his Cheshire Cat smile. I didn’t even bother to finish my sentence.
I was going to put together a band of famous doctors and they were going to play live at the Kennedy Center. As he disappeared to another meeting Mike called back over his shoulder, “Call Francis Collins. He plays guitar.” I’m not a scientist or even particularly interested in science, but I did have cancer (in remission, thanks docs!) so I knew that not only is Collins the head of the NIH, but he was also the man who led the mapping of the aforementioned Human Genome. I simply couldn’t bring myself to pick up the phone and say, “Hey Francis baby, let’s jam.” I sent an email. Within seconds, my phone rang. “Hello Glen, This is Francis.” We talked for a half hour about music and how much music means to him and how he couldn’t wait for this gig. All the time I was talking I tried not to imagine the day that President Obama must have call Ed Francis to inform him of his nomination to be head of the NIH. He gave me a few of his colleagues to call, people like Dr. Steve Libutti who played drums. Libutti’s day job is Director of Montefiore Einstein Center for Cancer Care and he was one of the pioneers of regional and targeted cancer therapy as well as an internationally recognized surgical oncologist and endocrine surgeon. Jonathan Lewin, Francis continued, played a mean sax and his day job was as Radiologist-in-Chief at John Hopkins Hospital, with secondary appointments as Professor of Oncology, Neurosurgery and Biomedical Engineering. I loved talking to them but kept thinking, I hope these guys can swing.
I made more calls and everyone was thrilled to talk, probably because I was the only one calling that day, or that year perhaps, who was not fighting a terminal disease or asking about the side effects of a particular chemo. Or calling to cut their funding. I just wanted to know if they could read chord changes. I left a phone message for John Burklow, Director of Communications for NIH. “If I’m out of the office, and this is a reporter who needs me immediately for a comment, please call my cell phone.” He had to be glad it was me calling about his sight-reading abilities and not 60 Minutes calling about some new cancer drug that causes a third eye to suddenly appear.
Once everyone was in place, I discovered I had four keyboard players, five guitars, one singing bass player, one drummer, one flute player, one harmonica, two trumpets and a sax. Not exactly a standard band configuration. I now had to figure out what the hell they were going to play. Mike was very clear the concert had to serve the greater purpose of research and FasterCures, so the doctors or Rock Docs as I was now calling them (Francis didn’t like Amino Acid) couldn’t just play the songs from Oklahoma! I concocted a medley of You’ve Got a Friend, Here Comes the Sun, and Help, songs I thought the doctors and audience could relate to. My partner Irwin Fisch and I started writing for four keyboard players, five guitars, one singing bass player, one drummer, one flute player, one harmonica, two trumpets and a sax. We didn’t have a clue as to the level of musicianship, let alone if they could sing. They said they could play, so I trusted them. If you can’t trust a doctor, whom can you trust? I made demos of the music with me singing the parts and sent them to the Roc Docs. One of the guitar players dropped out immediately. He said he would be much happier (and I would be much happier) to sit in the audience. Francis, who struck me as a winning combination of James Taylor and Jimmy Stewart, arranged for the local DC doctors to get together over Labor Day and run through some of the music as a pre-rehearsal rehearsal. I mentioned this to Larry Lesser, Mike’s producer, and before I could get out, “Should I…?” he said, “Go!”
On Labor Day, I met all these brilliant people in Francis’s living room and frankly, I hadn’t encountered such enthusiasm in my bands since I was a kid. No “when is the break?” “How much is this paying?” “Who’s got the weed?” They were dying to do this. Although they were all completely terrified. They tried to smile and joke, but I know terror when I see it. They were on the high diving board and they really could only dog paddle. They were getting into a Ferrari and didn’t quite know how to use a clutch. They had diligently practiced the music I sent. A few surprises: the keyboard players asked me to write out the chord notes as opposed to the chord symbols, something no high school player would ask, but fair enough. High school players can’t cure cancer. Most of The Players were uncomfortable with just their own music parts and wanted the words written in. Again, fair enough. One musician asked if he should bring a music stand. I gently said, “Do you ask if you should bring a scalpel to the operating theater.” “We will supply music stands. And even lights.” They started to play.
Francis has a lovely, sweet, folk-type voice and we ran through You’ve Got A Friend. It wasn’t half bad. Some of the chords were misread, the rhythm was all over the place, the bass player forgot to bring the music, so he didn’t have a clue as to what I was talking about when I said let’s start at bar five, but all in all, I was thrilled. They must have seen my facial muscles relax, because they relaxed as well. It was a complete role reversal. All of a sudden, I was the doctor. And they were the patients anxiously awaiting the results of their test. Would they live? (That is, play the concert or be fired? They would play.) Was it fatal? (No, it was not. We’d rehearse and make it great.) Would they need more treatment (Oh, yes. But it won’t be as scary as the first time.) We moved on to Here Comes the Sun. John Tisdale, who is on the way to curing sickle cell disease, told me he could sing the lead. While playing his bass, his light, airy baritone wafted through Bethesda and Dr. John Tisdale became the Fifth Beatle. I called Milken and said, “It’s gonna work.” Milken said, “Told you!”
We had a full rehearsal scheduled for the Thursday before the Saturday show in the cavernous Kennedy Center rehearsal room. No more living room. This is the big time. Finally, all the musicians would be there, the trumpets, the sax. I even brought down three background singers from who have sung for everyone from Bette Midler to Dolly Parton. I thought my Rock Docs were going to explode with joy when they heard my pros sing along with them. They were now the center of the Oreo surrounded by world class cookies. Their playing improved immeasurably. They presence of the pros energized the amateurs, especially Leonard Zon, founder and director of the Stem Cell Program at Boston Children’s Hospital and the first incumbent of the newly established Grousbeck Professor of Pediatrics Chair at Children’s. And trumpet player. In fact, Len was so enthusiastic he insisted on playing the trumpet over everyone’s melody, over everyone’s solo and all the interludes. I gently told him the arrangement needed to build and if he simply played the assigned part, it might sound better. Then I had to tell them the bad news. The Kennedy Center could only give the Rock Docs one hour to rehearse on stage. I could feel their panic suck the air out of the room.
The usually very brave, very stoic, very brilliant doctors got very quiet. I, the new resident-in-chief, a bit too cheerfully said we didn’t need more rehearsal and I’d meet them in an hour. They started to pack up all their gear; I gently told them we had stagehands to do that, they didn’t have to carry anything, not even their guitars. I said stagehands were sort of like nurses. Just let them do their jobs or they get very testy. Musically, the on-stage rehearsal went fine. But Larry Lessor came up to me and asked if they were in pain. Their faces were priceless. I’ve never seen terror so well expressed. They looked like they had been painted by Munch. Now, I thought, they know how we feel, lying in a flimsy robe on that gurney waiting to get knocked out and cut open in the operating theater. Larry ran up on the stage and started waving his hands and dancing, all 6’5, three hundred pounds of him. Even that didn’t work.
Saturday was show day. It started with an emergency. One of my musicians forgot her anti-depressants; believe me, you don’t want to go into show day if one of the musicians isn’t on her meds. Is there a doctor in the house? Fortunately, yes! I had no compunction in e-mailing the most brilliant doctors in the world for a prescription. I got a response immediately from Wolfram Goessling, day job: Assistant Professor, Depart of Medicine, Harvard Medical School whose laboratory seeks to understand the signals that indicate organ injury and regulate growth and regeneration. Night job: Trumpet player. Wolfram asked for the vital information from my musician and the prescription was there within the hour and my musician was happy, happy, happy.
Next emergency: my bass player came down with a virulent rash on his arm. Another e-mail blast. This time Leonard Zon answered and asked for me to take a picture of his arm on my phone and forward it to him. Len then responded and said he’d look at it at rehearsal. At 8:00 PM the show started and my patient/musicians had to fend for themselves. They waited in the green room for Whoopi Goldberg to make their introductions. I decided the Rock Docs should wear lab coats. Just in case the music wasn’t up to par, the visuals would help. But Doc Rock needed no help. The curtain opened, Francis made his Jimmy Stewart-esqe speech and he had the audience eating out of the palm of his hand. Obviously, someone who runs a 30 billion dollar agency knows how to make a speech. You Got A Friend was perfect. Everyone was in tune, Francis rocked the vocal and after the Jon Lewin alto sax solo received spontaneous applause I knew audience was going on the journey with us. I had structured the number with a false ending after Friend. I wanted the audience to think the number was over. So there was a huge ovation and then John O’Shea (Day job: Chief of Molecular Immunology and Inflammation Branch at NIAMS. Night Job: Mandolin player) counted off Here Comes the Sun, and although it was 8:30 PM at the Kennedy Center, the Sun did indeed come out.
Tisdale on vocals, aided by the husky alto of Sally Rockey who is in charge of giving out the grants at the NIH, brought the medley to a new high. (I had to wonder if Sally could somehow convince Francis to give ME a grant so the NIH could see the correlation between an artist’s bank account and happiness.) After Sun there was no break. Libutti changed the tempo all by himself (take a bow, Steve, brilliantly done) and the group rocked into a raucous version of Help! The audience was on its feet! And when Leonard Zon started blowing his trumpet solo, the roof of the Kennedy Center flew off.
Doc Rock was a sensation and, using band talk (although probably not Doctor-speak) they killed! The operation was a success. The experimental drug got FDA approval. The patient will live to fight again. And of course, Milken was right! It was a great idea.
Later that night, 10-time Grammy winner Kenny (Babyface) Edmonds took the stage and spoke before he sang. He said that he had no problem performing after Melissa Manchester or Stevie Nicks or any of the artists on stage, but no one told him he had to play after Doc Rock. He said that was completely unfair and no artist could ever hope to follow them. I heard cheers emanate from the green room when, with a sly smile, Edmonds said, “Maybe I should go to medical school.”.
In the hotel bar, where all real musicians gather after a concert, Steve Libutti, Director of Montefiore Einstein Center for Cancer Care/Drummer and I were having a late night drink, going over the events of the night. This peerless doctor has a baby face that would put Kenny to shame, but when he talked about the experience he was positively angelic. He said, “I finally got to live my dream. I opened for Stevie Nicks!”