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Author Topic: Latest on Ninth Cooley's Cooley's Anemia Symposium Registration opens soon!!  (Read 18654 times)
Sharmin
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Little A


« on: January 12, 2009, 12:55:48 PM »

http://www.nyas.org/events/eventDetail.asp?eventID=13345&date=10/21/2009%208:00:00%20AM

Quote
Ninth Cooley's Anemia Symposium
Sponsored by the Cooley's Anemia Foundation and the New York Academy of Sciences

Registration opening soon.

Thanks to scientific advances, individuals with thalassemia—a group of genetic blood disorders which includes Cooley's Anemia—are now living into their 40's and 50's. Not only are individuals living longer, but their quality of life has increased. Scientifi c and clinical advancements have resulted in new iron-chelating drugs, early detection of organ failure, an understanding of adult complications associated with living with thalassemia (osteoporosis, heart failure, growth hormone defi ciency, pulmonary hypertension, and in fertility) and promising progress towards the ultimate magic bullet—a cure in the form of bone marrow and cord blood transplants, or gene therapy.

The symposium will integrate basic science and clinical research so that both scientists and clinicians can develop a mutual understanding of recent progress in thalassemia.

Scientific Organizing Committee:

Elliott Vichinsky, MD
Director, Hematology/Oncology
Children's Hospital and Research Center in Oakland, CA
Ellis Neufeld, MD, PhD
Associate Chief, Division of Hematology/Oncology
Children's Hospital Boston

Plenary Sessions on:

Iron Regulation and Metabolism
Gene Regulation and Therapy
Iron Overload and Chelation Therapy
Iron Imaging
New Advances in Stem Cell
Transplantation
New Therapy For Hemoglobin F
Cardiac Dysfunction
Nutrition and Antioxidant Therapies
Clinical Syndromes in Thalassemia and Disease Severity
The Adult Thalassemia Patient

For complete agenda, please click here.

CALL FOR ABSTRACTS
Deadline for abstract submission is Friday, August 14, 2009. For complete abstract instructions, please e-mail: cooleys@nyas.org. Type the words "Abstract Information" in the subject line - no need to type a message. Instructions will be forwarded automatically. Any questions, please call 212.298.8681.

Travel Fellowships will be available for this meeting. Further information will be available shortly.

Dissemination Material
Listen to the eBriefing from the last Cooley's symposium at www.nyas.org/Cooleys
Read publications from our previous Cooley's Symposia at www.nyas.org/CooleysAnnals


This sounds really exciting!!

Sharmin
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« Reply #1 on: January 12, 2009, 12:57:22 PM »

Quote
Nutrition and Antioxidant Therapies

Please note the nutrition and antioxidant therapy that Dr. Vichinsky told us about - and that Andy has been talking about. 

Sharmin
« Last Edit: January 12, 2009, 03:08:43 PM by sharmin » Logged

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« Reply #2 on: January 12, 2009, 02:28:46 PM »

It is only for thal, right? Never mind, I would never be able to attend this.
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« Reply #3 on: January 12, 2009, 03:15:07 PM »

Dore,

I think that the information at this symposium would benefit you because your treatment is the same as that for thalassemia.  Transfusion and chelation are as relevant for you as they are for a thal.  I am hoping to attend this and if I am able to I will try to get as much information for our friends here as possible.  A few others have mentioned that they will be in attendance and hopefully together we can put together some information for everyone. 

Sharmin
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« Reply #4 on: January 12, 2009, 03:52:26 PM »

I am planned to go back to the States in summer, but I do not think i make a chance to attend this conference.
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Sharmin
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« Reply #5 on: January 12, 2009, 04:02:55 PM »

It would have been a pleasure to meet you Dore
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« Reply #6 on: February 22, 2009, 08:36:44 PM »

The Preliminary Program has been released and looks great. This program is at least equal to the International Conference that recently took place in Singapore. Many of the same doctors, along with some key additions, will be presenting. It looks like it will e an excellent conference.


NINTH COOLEY’S ANEMIA SYMPOSIUM
Oct 21- 24, 2009
Preliminary Program: Last modified January 28th, 2009
WEDNESDAY, OCTOBER 21, 2009
4:00 pm – 5:00 pm: Registration (Coffee available)
5:00 pm – 5:15 pm: Welcome Remarks:
Stacie Bloom, PhD; The New York Academy of Sciences, New York, NY
Elliott Vichinsky, MD, Childrens Hospital Oakland, CA
Anthony J. Viola, Cooley's Anemia Foundation National President, New York, NY
5:15 pm – 6:00 pm: Keynote Lecture
Thalassemia Progress and Potential - An Overview
Alan Cohen, MD, Children’s Hospital of Philadelphia, PA
6:00 pm – 6:45 pm: Keynote Lecture
Pathogenesis and Management of Tissue Injury in Thalassemia
Chaim Hershko, MD, Shaare Zedek Medical Center, Jerusalem, Israel
6:45 pm – 8:00 pm: Welcome Reception
THURSDAY, OCTOBER 22, 2009
7:30 am – 8:30 am: Registration, Breakfast and Poster Set-up
Breakfast Workshops:

Cultural Influences on Compliance and Care Kathleen Durst, MA, LMSW, Cooley’s Anemia Foundation, New York, NY

Pregnancy and Chelation: Iron Regulation and Metabolism Melody Cunningham, MD, University of Tennessee Health Sciences Center, Memphis, TN

Antioxidants and innovative approaches to treating the pathophysiology in thalassemia Eliezer Rachmilewitz, MD, The Edith Wolfson Medical Center, Holon, Israel

8:30 am – 9:00 am: Keynote Lecture
Thalassemia as a Global Health Problem: Recent Progress towards its Control in the Developing Countries
Sir David Weatherall, MD, FRS, University of Oxford, Headington, UK
9:00 am – 10:20 am: Plenary Session I: Iron Regulation and Metabolism

Session Chair: Melody Cunningham, MD, University of Tennessee Health Sciences Center, Memphis, TN

9:00 am – 9:20 am: Iron Regulation and Ineffective Erythropoiesis, JAK 2
Stefano Rivella, PhD, Weill Cornell Medical Center, New York, NY 2
9:20 am – 9:40 am: Hepcidin in Thalassemia
Elizabeta Nemeth, PhD, UCLA David Geffen School of Medicine, Los Angeles, CA
9:40 am – 10:00 am: Ferritin Expression and Regulation
Elizabeth Theil, PhD, Children’s Hospital Oakland Research Institute, CA
10:00 am – 10:20 am: Cellular Modifiers of Hepcidin Production and Iron Transport
Mark D. Fleming, MD, PhD, Children’s Hospital Boston, Boston, MA
10:20 am – 10:50 am: Coffee Break
10:50 am - 1:10 pm: Plenary Session II: Gene Regulation and Therapy
Session Chair: Jeffery L. Miller, MD, National Institutes of Health, Bethesda, MD
am: Erythroid Transcription Factors
10:50 am – 11:10
Frank Grosveld, PhD, Erasmus Medical Center, Rotterdam, The Netherlands
11:10 pm – 11:30 pm: Increasing Beta-globin Expression
Punam Malik, MD, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
11:30 am – 11:50 am: Cell Therapies in a Humanized Mouse Model of Cooley’s Anemia
Thomas M. Ryan, PhD, University of Alabama at Birmingham, Birmingham, AL
11:50 am – 12:10 pm: Design of Safe and Effective Vectors in Thalassemia
David Bodine, PhD, National Human Genome Research, NIH, MD
12:10 pm – 12:30 pm: Clinical Implementation of Globin Gene Therapy: Prospects and Challenges
Michel Sadelain, MD, Memorial Sloan Kettering Cancer Center, New York, NY
12:30 pm – 2:10 pm: Lunch and Poster Session I
2:10 am - 3:10 pm: Plenary Session II: Gene Regulation and Therapy (continued)
2:10 pm – 2:30 pm: Phase II Gene Therapy Clinical Trial for Beta-Thalassemia
Philippe LeBoulch, MD, Harvard Medical School and Brigham & Women's Hospital, Fontenay-aux-Roses, France
2:30 pm – 2:50 pm: Safety and Efficacy of G-CSF Mobilization in Major Beta-Thalassemia
Patients in View of Human Gene Therapy of Thalassemia
Evangelia Yannaki, MD, George Papanicolaou Hospital, Thessaloniki, Greece
2:50 pm – 3:10 pm: Gene Therapy for Sickle Cell Disease and Beta - Thalassemia Using Lentiviral Vectors to Permanently Enhance Fetal Hemoglobin Production
Derek A. Persons, MD, PhD, St. Jude Children’s Research Hospital, Memphis, TN
3:10 pm – 3:40 pm: Coffee Break 3
3:40 pm – 5:40 pm: Plenary Session III: Iron Overload and Chelation Therapy
Session Chair: Dudley Pennell, MD, FRCP, Royal Brompton Hospital, London, UK
3:40 pm – 4:00 pm: Deferiprone
Antonio Piga, MD, University of Turin, Orbassano, Italy
4:00 pm – 4:20 pm: Combined Therapy
Renzo Galanello, MD, University of Cagliari, Cagliari, Italy
4:20 pm – 4:40 pm: Deferasirox
John Porter, MD, University College London, UK
4:40 pm – 5:00 pm: A Search for Clinically Effective Iron Chelators
Raymond Bergeron, PhD, University of Florida, Gainesville, FL
5:00 pm – 5:20 pm: Survival Trends Using Combination Therapy
Paul Telfer, DM, FRCP, Barts and The London School of Medicine and Dentistry, London, UK
5:20 pm – 5:40 pm: Current Strategies
Ellis Neufeld, MD, Children's Hospital of Boston, MA
5:40 pm – 7:30 pm: Reception and Poster Session II
Highlighting the Cooley’s Anemia Foundation Clinical Investigators and Research Associates
FRIDAY, OCTOBER 23, 2009
8:00 am – 9:00 am: Registration, Breakfast and Poster Set-up
Breakfast Workshops:

Ongoing and Upcoming Clinical Trials Janet L. Kwiatkowski, MD, MSCE, Children’s Hospital of Philadelphia, Philadelphia, PA

Growth Hormones/Endocrine Therapy Ratna Chatterjee, MD, PhD, University College Hospital, London, UK

9:00 am – 10:00 pm: Plenary Session IV: Iron Imaging
Session Chair: Roland Fischer, PhD, University Clinic Hamburg-Eppendorf, Germany
9:00 am – 9:20 am: MRI Measurement of Tissue Ferritin and Hemosiderin Iron
Gary Brittenham, MD, Columbia University College of Physicians and Surgeons, New York, NY
9:20 am – 9:40 am: Interpreting Liver Iron Concentration Measurements and Imaging
Tim St. Pierre, PhD, The University of Western Australia, Crawley, Australia
9:40 am – 10:00 am: Predicting Pituitary Iron and Endocrine Damage using MRI
John C. Wood, MD, Children's Hospital Los Angeles, Los Angeles, CA
10:00 am – 10:30 am: Coffee Break 4
10:30 am – 11:50 pm: Plenary Session V: New Advances In Stem Cell Transplantation
Session Chair: Mark Walters, MD, Children’s Hospital & Research Center, Oakland, CA
10:30 am – 10:50 am: Introduction and Overview of HCT for Thalassemia Major
Mark Walters, MD, Children’s Hospital & Research Center, Oakland, CA
10:50 am – 11:10 am: Multiple Unit Cord Blood Transplantation
Joanne Kurtzberg, MD, Duke University Medical Center, NC (invited)
11:10 am – 11:30 am: Novel Preparative Regimens with Reduced Toxicity before Transplantation
of Patients with Thalassemia
Franco Locatelli, MD, University of Pavia, Pavia, Italy
11:30 am – 11:50 pm: Progress in Hematopoietic Stem Cell Transplantation as Allogeneic
Cellular Gene Therapy in Thalassemia
Antonella Isgro, MD, PhD, International Centrer for Transplantation in Thalassemia and Sickle Cell Anemia, Mediterranean Institute of Hematology, Rome, Italy
11:50 am – 12:50 pm: Data Blitz Session I
5*12 min presentations from young investigators selected from the poster abstracts
12:50 pm – 2:00 pm: Lunch
2:00 pm – 3:00 pm: Plenary Session VI: New Therapy For Hemoglobin F
Session Chair: Griff Rodgers, National Institute of Diabetes Digestive and Kidney Diseases, Bethesda, MD
2:00 pm – 2:20 pm: Decitabine Trials
Nancy Olivieri, MD, Toronto General Hospital, Toronto, Canada
2:20 pm – 2:40 pm: Small Molecule Screens for the Identification of Novel Inducers of Fetal
Hemoglobin
Benjamin Ebert, MD, PhD, Brigham and Women's Hospital, Boston, MA
2:40 pm – 3:00 pm: Novel Erythropoietic Fetal Hemoglobin Inducers
Susan P. Perrine, MD, MMS, Boston University School of Medicine, Boston, MA
3:00 pm – 3:40 pm: Coffee Break
3:40 pm - 4:40 pm: Plenary Session VII: Cardiac Dysfunction
Session Chair: Thomas Coates, MD, Children’s Hospital Los Angeles, Los Angeles, CA
3:40 pm – 4:00 pm: Early Prediction of Cardiac Dysfunction
John Malcolm Walker, MD, FRCP, University College Hospital, London, UK
4:00 pm – 4:20 pm: Cardiac Siderosis and Imaging Techniques
Dudley Pennell, MD, FRCP, Royal Brompton Hospital, London, UK
4:20 pm – 4:40 pm: Pulmonary Hypertension in Thalassemia
Claudia R. Morris, MD, Children’s Hospital and Research Center Oakland, Oakland, CA 5
4:40 pm – 6:40 pm: Reception and Poster Session III
SATURDAY, OCTOBER 24, 2009
8:00 am – 9:00 am: Registration and Breakfast
* Continuous coffee until lunch but no formal coffee break due to the late start
Breakfast Workshops:

Hydrops – Elliott Vichinsky, MD, Childrens Hospital Oakland, CA

Liver Disease - Paul Harmatz, MD, Children’s Hospital of Oakland, CA

Cardiac Disease - John C. Wood, MD, Children's Hospital Los Angeles,CA

Cord Blood Registries: Role in Thalassemia – Burt Lubin, MD, Children’s Hospital Oakland Research Institute, CA

9:00 am – 9:40 am: Plenary Session VIII: Nutrition and Antioxidant Therapies
Session Chair: Alexis A. Thompson, MD, MPH, Children’s Memorial Hospital, Northwestern University, Chicago, IL
9:00 am – 9:20 am: Nutritional Deficiencies in Thalassemia
Ellen B. Fung, PhD, RD, Children's Hospital and Research Center Oakland, Oakland, CA
9:20 am – 9:40 am: Nutrition and Antioxidant Therapies
Ashutosh Lal, MD, Children’s Hospital and Research Center Oakland, Oakland, CA
9:40 pm – 10:00 pm: Coffee Break
10:00 am – 11:00 am: Plenary Session IX: Clinical Syndromes in Thalassemia and Disease Severity
Session Chair: David Chui, MD, Boston University School of Medicine, Boston, MA
10:00 am – 10:20 am: Transcriptional Silencing of HBF by BCL11A
Stuart H. Orkin, MD, Children's Hospital Boston, Boston, MA
10:20 am – 10:40 am: Alpha-Thalassemia Syndromes
Elliott Vichinsky, MD, Childrens Hospital Oakland, CA
10:40 am – 11:00 am: Natural History of Thalassemia Intermedia
Caterina Borgna-Pignatti, MD, University of Ferrara, Ferrara, Italy
11:00 am – 12:00 pm: Data Blitz Session II
5*12 min presentations from young investigators selected from the poster abstracts
12:00 pm – 1:00 pm: Lunch 6
1:00 pm – 2:30 pm: Plenary Session X: The Adult Thalassemia Patient
Session Chair: Patricia Giardina, MD, New York Presbyterian Hospital-Weill Cornell Medical Center, New York, NY
1:00 pm – 1:20 pm: Reproductive Issues and Pregnancy in Females with Thalassemia
Sylvia Titi Singer, MD, Children's Center and Research Center Oakland, Oakland, CA
1:20 pm – 1:40 pm: Thrombosis, Stroke, and its Prevention
Maria Domenica Cappellini, MD, University of Milan, Milano, Italy
1:40 pm – 200 pm: The Adult Thalassemia Patient with Osteoporosis
Evangelos Terpos, MD, PhD, University of Athens School of Medicine, Athens, Greece
2:00 pm – 2:30 pm: Panel Discussion: Adults with Thalassemia in a Pediatric World

Dawn F. Adler, MA, Thalassemia International Federation, Davis, CA

Laurice Levine, MA, CCLS, Children's Hospital and Research Center Oakland, Oakland, CA

Gargi Pahuja, Treasurer Thalassemia Action Group (TAG), Jersey City, NJ

2:30 pm – 2:50 pm: Symposium Summary
Arthur W. Niehuis, MD, St. Jude’s Children’s Research Hospital, Memphis, TN
2:50 pm – 3:00 pm: Closing Remarks




The program is also attached as a pdf file.
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Sharmin
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« Reply #7 on: February 22, 2009, 09:23:01 PM »

Andy,

Thank you for posting this info.  I am very excited about this conference and at this time I have every intention to attend.  I hope that it works out for me to be there. 

I hope to see many of our members at this conference!

Sharmin
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« Reply #8 on: February 23, 2009, 12:41:21 PM »

I emailed them - registration is still not open!!
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« Reply #9 on: February 23, 2009, 01:05:39 PM »

Hello all,

I intent to attend this, thanks for the heads up.

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« Reply #10 on: February 23, 2009, 01:13:47 PM »

Andy and other members,

Does it make any sense bringing my son to this?  I want for him to be a part of his health care and I want for him to learn first hand why it is important to chelate, take supplements etc.  He will be 11yrs old next year and he has met many of the doctors who will be there. 

What do you all think?

Sharmin
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« Reply #11 on: February 23, 2009, 02:22:10 PM »

Hi Sharmin,

Its a tough call, seminars are difficult to digest even for adults. The week is pretty full and tiring with lots of information.

You definately want him to listen to the lectures for general awareness about his condition. It will also help him taking charge of his health and be more understanding towards different supplements and vitamins he is taking as part of general health and immunity.

I think at his age, he needs to be educated gradually.......

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« Reply #12 on: February 23, 2009, 02:49:26 PM »

Sharmin,

I think whether you bring little A depends in what else will be there. Is TAG also organizing events?
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« Reply #13 on: February 23, 2009, 06:30:22 PM »

Sharmin

I totally agree with you about making him part of his care program, but from my expierence in conferences either here or in Singapore, i find that it will be very boring for him at this age. Usually the day starts at 9 am and ends at 5 pm (the least) and for an 11 year old boy this is too long in spite of the several breaks.

Also i know that you will like to attend all lectures and it will be hard to put him on a chair all this time especially that not all lectures are easy to understand

Sometimes in conferences, a CD with the important lectures is released, so i suggest you choose the easy and interesting ones and make him see them so this will catch his interest without being obliged to attend every single thing.

manal
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« Reply #14 on: February 23, 2009, 06:43:01 PM »

Thanks Canadian Family, Andy and Manal,

These are some good points.  Unless if there are some activities planned for children the lectures may be quite difficult for him to sit through.  I am still wondering how I will get my husband to sit through them 

Thanks again,

Sharmin

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