Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > News and Events
Register FAQ Search Today's Posts Mark Forums Read

News and Events News related to bone marrow failure diseases

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Dec 12, 2006, 02:47 AM
Marrowforums Marrowforums is offline
Marrowforums.org
 
Join Date: Jul 2006
Posts: 709
AA&MDSIF 2007 Patient & Family Conference

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) has announced that its 2007 Patient & Family Conference will be held in Las Vegas, Nevada on August 15-17, 2007. The Conference will run jointly with the Foundation's 2nd Annual Nurses Conference.

Last year more than 200 patients and their families attended the Conference in Nashville, where they heard about the latest research and treatment options for bone marrow failure diseases from leading medical experts and had the opportunity to talk with other patients and caregivers.

More information will be available in the coming months.
Reply With Quote
  #2  
Old Wed Mar 28, 2007, 03:07 PM
Katherine Katherine is offline
Member
 
Join Date: Sep 2006
Posts: 1
Registration available for AA&MDSIF 2007 Patient & Family Conference

Hey All,

We just wanted to let you know that registration has started for the 2007 AA&MDSIF Patient & Family Conference in Las Vegas.

Visit the following link for more information:

http://www.aamds.org/aplastic/inform...nt_confere.php
Reply With Quote
  #3  
Old Fri Mar 30, 2007, 01:26 AM
choijk choijk is offline
Member
 
Join Date: Mar 2007
Location: Los Angeles, CA
Posts: 47
Helpful?

Any thoughts on how helpful this conference is? I been doing a lot of research on my own and I was wondering if I would gain any new information there? Thank you for your input!
__________________
June, daugther. 71 yr old father dx on 01/13/07 with MDS/MPD - RCMD/Secondary MF). No excess blasts no excess chromosomes. Hypercelluar 70-80%. Low hgb. Transfusion dependent every 3-4 weeks/2pints. Began Procrit on 03/27/07. No progress thus far. Taking Folic Acid, B6, CoQ10, and Cod Liver Oil
Reply With Quote
  #4  
Old Sun Apr 1, 2007, 06:45 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,349
Quote:
Originally Posted by choijk View Post
Any thoughts on how helpful this conference is? I been doing a lot of research on my own and I was wondering if I would gain any new information there? Thank you for your input!
The reasons to attend vary from person to person. In my experience, almost all of the hundreds who attend the annual Patient Conference comes away with something of value, e.g., a better general understanding of their disease, specific medical information, or the experience of meeting other people dealing with the same disease and seeing friends from past conferences.

Newly diagnosed patients and their families may attend the conference to hear the experts speak and for the chance to ask their questions in person. The Patient Conference always includes introductory sessions that cover the disease basics, as well as talks about the latest treatment developments. The AA&MDSIF shares news and information with all patients year-round, but those who attend the conference hear what's new in detail.

Some patients and their families attend primarily to find, meet, and talk to other patients about all facets of their illness, not just the medical side, but also the practical day-to-day issues. Given how rare bone marrow diseases are, it's often hard to find other patients in your city, so patients find each other through organizations like the AA&MDSIF or websites like Marrowforums. No two attendees have exactly the same interests and situation, so the benefits of attending are personal, but there is a strong feeling of camaraderie when you are among people facing similar challenges.

Some patients and their families, like Ruth and I, go to support others the way we were supported.

If you have only a single specific question, I don't think you should wait for a conference to ask about it. You can already ask your doctor(s), ask the AA&MDSIF, discuss it here in the forums, or do your own research. I think the benefits of the Patient Conference are from the overall experience, and that you can't predict which part of the experience will be of most benefit.
Reply With Quote
  #5  
Old Mon Apr 2, 2007, 01:06 AM
choijk choijk is offline
Member
 
Join Date: Mar 2007
Location: Los Angeles, CA
Posts: 47
Thank you Neil

Thanks for your advice Neil. I would love to attend except that I do have some financial concerns at this time. But I have been educating myself on MDS and have been communicating with others with MDS as well. I will definetly think through this. Vegas is so close and I know it is such a great opportunity to attend!
__________________
June, daugther. 71 yr old father dx on 01/13/07 with MDS/MPD - RCMD/Secondary MF). No excess blasts no excess chromosomes. Hypercelluar 70-80%. Low hgb. Transfusion dependent every 3-4 weeks/2pints. Began Procrit on 03/27/07. No progress thus far. Taking Folic Acid, B6, CoQ10, and Cod Liver Oil
Reply With Quote
  #6  
Old Mon Apr 2, 2007, 10:36 PM
Steve Kessler Steve Kessler is offline
Member
 
Join Date: Aug 2006
Location: Bellevue, WA
Posts: 50
Help is available

Financial concerns needn't be too big a burden, especially if you are close enough to drive. Conference registration costs in the past have been covered by the drug company sponsors and cheap hotels are available, try bidding very low on Priceline. Meals are partly provided and inexpensive buffets shouldn't be too hard to find at a nearby casino. Stay away from the tables!!

A good reason to attend is to find other patients living close to you who canshare experiences. The presentations are first rate and new discoveries are constantly being discussed, particularly drug cocktails and newer drugs, such as HDACs. The next year's conference will be on the other coast, so this is a great opportunity for you and your dad.
__________________
Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
Reply With Quote
  #7  
Old Thu Apr 26, 2007, 06:32 PM
choijk choijk is offline
Member
 
Join Date: Mar 2007
Location: Los Angeles, CA
Posts: 47
Attending LV Conference!

Thanks Neil and Steve for your input! After giving it much thought, my parents and I decided to attend the convention in August. I was wondering, is anyone on the forum attending? I would love to meet you all in person! If not, I will come back with anything interesting or new I learned and share with you all! God Bless!
__________________
June, daugther. 71 yr old father dx on 01/13/07 with MDS/MPD - RCMD/Secondary MF). No excess blasts no excess chromosomes. Hypercelluar 70-80%. Low hgb. Transfusion dependent every 3-4 weeks/2pints. Began Procrit on 03/27/07. No progress thus far. Taking Folic Acid, B6, CoQ10, and Cod Liver Oil
Reply With Quote
  #8  
Old Fri Apr 27, 2007, 03:18 AM
Ruth Cuadra Ruth Cuadra is offline
Administrator
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 445
Marrowforums members to meet at conference

To June and everyone,

There will be a short presentation about Marrowforums during the conference and a time set aside (yet to be determined) for members to meet and greet each other. I'll post the details here as soon as they are known. Neil and I will be there and hope to meet as many members as possible.

Regards,
Ruth
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
Reply With Quote
  #9  
Old Fri Apr 27, 2007, 09:32 PM
Andrea Pecor Andrea Pecor is offline
Member
 
Join Date: Aug 2006
Location: Yorktown Heights, NY, USA
Posts: 19
Las Vegas conference

Hi everybody,

I'll be there, too - I have been to almost every conference since, well since...well, for more than 20 years! I look forward to meeting you all.

best,
Andrea Pecor
__________________
Andrea, diagnosed SAA 1980; treated with ATG 5X, diagnosed Hepatitis C (from transfusion) 1980, diagnosed PNH (small clone) approx 1998
Reply With Quote
  #10  
Old Sat Apr 28, 2007, 11:51 PM
Connie Connie is offline
Member
 
Join Date: Aug 2006
Location: Kalama, WA
Posts: 714
2007 Conference

My husband and I intend on going also, if we can get airline tickets. Having some trouble with that.
Connie
__________________
Connie, diagnosed with AA in Nov. of 2000. Had ATG treatment with short remission. Then had ALG treatment in 2001. Am in remission as of 10-2007.
Reply With Quote
  #11  
Old Wed Jun 6, 2007, 02:40 AM
Marrowforums Marrowforums is offline
Marrowforums.org
 
Join Date: Jul 2006
Posts: 709
Conference speakers announced

The AA&MDSIF has announced program details for the 2007 Patient & Family Conference to be held in Las Vegas, Nevada on August 15-17, 2007.

Featured Presenters
  • Aplastic Anemia: Dr. Neal Young, National Heart, Lung & Blood Institute of the National Institutes of Health
  • PNH: Dr. Jaroslaw Maciejewski, Cleveland Clinic Foundation
  • MDS: Dr. Steven Gore, Sidney Kimmel Cancer Center of Johns Hopkins
  • Bone Marrow Transplants (BMT): Dr. Joachim Deeg, Fred Hutchinson Cancer Research Center
  • Pediatric Issues: Dr. David Margolis, Children's Hospital of Wisconsin
  • Scientific Highlights in Bone Marrow Failure Diseases (BMFD) over the Past Year, and the Future of Research in BMFD: Dr. Ron Paquette, University of California, Los Angeles
Topics and Events
  • Meet & Greet Dinner: Get to know other patients and family members and hear an overview of bone marrow failure diseases.
  • Sessions: Hear information and updates on treatments, iron overload, bone marrow and stem cell transplants, and pediatric issues.
  • Question & Answer Sessions: Ask questions of the expert presenters.
  • Roundtable discussions: Talk with presenters and other attendees in small groups.
  • Support & Coping Workshops: Meet with others for support in a facilitated group.
  • Expo Area: View exhibits and learn about medications, products, and services.
  • Marrowforums Get-Together: Meet other forum members.
Conference Hotel
Renaissance Las Vegas Hotel
3400 Paradise Road
Las Vegas, Nevada

Registration is free if you sign up before July 16, 2007. After July 16, the fee is $100 per person. Late registration at the door will be available for $150 per person.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Free AA&MDSIF Conference Registration Ends July 16th Marrowforums News and Events 0 Wed Jul 4, 2007 07:19 PM
NMDP Sponsors Survivor's Conference on Life After Transplant Marrowforums News and Events 1 Wed Jul 4, 2007 04:01 AM
AA&MDSIF 2006 Patient & Family Conference Marrowforums News and Events 4 Wed Aug 30, 2006 09:55 PM


All times are GMT -4. The time now is 12:55 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2016 Marrowforums.org