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AA&MDSIF 2010 Patient & Family Conference
The Aplastic Anemia & MDS International Foundation (AA&MDSIF) will hold its 2010 Patient & Family Conference in Washington, DC from Saturday, July 10 through Tuesday, July 13, 2010. This is the biggest conference of the year for bone marrow failure disease patients. You'll need to register both for the conference and for the conference hotel if you will be staying there.
Conference schedule: Sat July 10: Pre-conference sessions (focus: disease overviews, patient resources)Conference reservations: Registration is free if you stay in the conference hotel and register by June 14, 2010. Otherwise, registration is $150 through July 9 and $200 starting July 10.Conference Location: Hyatt Regency BethesdaHotel reservations: Book by June 18 for the $125 conference rate.For more information, see the AA&MDSIF conference page or contact the AA&MDSIF. Marrowforums will be at the Patient Conference. Stop by our exhibit booth. We look forward to seeing old friends and making new friends. You are also welcome to attend either of the Marrowforums Overview sessions on Saturday July 10 in the hands-on Online Learning Lab. If you will be at the Patient Conference we welcome you to post here to let other forum members know you'll be there. It's a unique chance to meet each other in person. |
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Tips from Marrowforums on getting the most out of the Patient Conference:
Before the Conference
At the Conference
After the Conference
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2010 Patient & Family Conference Schedule Planner
Marrowforums offers a downloadable Conference Schedule Planner (PDF, 48K) based on the 2010 Patient & Family Conference Schedule published by the AA&MDSIF. The conference schedule is subject to change without notice but we'll do our best to keep the planner up to date if the schedule changes. This is the first time we've created such a planner so please let us know what you think! |
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Hi Neil and Ruth,
Just wanted to say that the kids and I will be there again this year. We had a great time last year and found the conference very interesting. Even though Evan is 2 years post BMT for AA and doing great, his journey will forever be a part of who we are. We have been so fortunate in as far as the wonderful support we received, both medically and emotionally, during our time that I desire to give back where ever possible. If sharing Evan's story gives one parent hope, then it's worth it, and I believe Evan and Emily can share a lot of insight and hope with other children coping with bone marrow failure and their siblings, representing a childs' perspective. The whole road trip and staying in a nice hotel is an adventure for us and allows me to steal away some precious time with my kids! Looking forward to seeing you both,
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee. www.caringbridge.org/visit/evanmacneil |
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Ruth and I look forward to seeing you and your family again, Nicole.
Will you get to spend some vacation time in Washington? There's a lot to see and most museums and monuments (and the National Zoo) are free. |
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View photos of past Patient and Family Conferences in the Marrowforums Photo Gallery. Many speakers, patients, and family members from past conferences will be back for the 2010 Patient and Family Conference.
2006 Patient and Family Conference (Nashville, TN)If you spot yourself in a photo and would like a full-resolution copy, let us know. |
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Just registered...
I just registered my husband and myself to attend - I'm looking forward to meeting some of the amazing people I've only met in print so far. Also, and especially, I'm interested in hearing the most current news and encouragement medical science has to offer.
See you in Bethesda...
__________________
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11 |
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Patient Conference news by the numbers:
29 days until the conference. The conference starts July 11, 2010. |
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The Metro DC Hope, Steps & A Cure fundraising and awareness walk will be held on July 11 in conjunction with the Patient Conference.
Conference attendees receive free walk registration but are invited to donate in honor of the walk and to encourage their family members and friends to donate as well. Donations can be made through one of the fundraising teams, including Team Marrowforums, or by registering as a "virtual walker" (a supporter not attending). For details see Metro DC Hope, Steps & A Cure. |
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the Marrowforums Conference Schedule Planner (PDF, 132K) has been updated with the latest information.
The session schedule remains the same, but we've now made clearer how the Metro DC Hope, Steps & A Cure Walk fits into the Patient Conference schedule: The Support Workshops for patients, spouses/partners of patients, family members, and parents of pediatric patients will end at 5:30pm on July 11, when the walk registration will already be progress. However, conference attendees receive free walk registration and can pick up their T-shirts after the workshops. The walk itself will start at 6:30pm.Summary: Sunday, July 11, 2010 |
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The Hyatt Regency Bethesda has extended the conference rate of $125 through June 20.
The AA&MDSIF has simlarly extended free conference registration. Registration for the Patient and Family Conference is free for those those staying at the hotel and who register by June 20. |
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Four days left until the 2010 Patient & Family Conference!
You can now download some of the slides to be presented at conference sessions, as PDF files, from the Agenda page. These slides will probably not be available in printed form at the conference. A few corrections have been made to the Marrowforums Conference Schedule Planner (PDF, 144K). Consider bringing a copy with you to the conference for easy reference. |
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Tools for Patients and Caregivers
Effective self-advocacy and "being a powerful patient" are themes of this year's Patient Conference. In line with that theme, Marrowforums has introduced new Tools for Patients and Caregivers.
In addition to the Treatment Center Map and Absolute Neutrophil Calculator, we offer two new tools. MDS patients are welcome to try our MDS Classification Tool and Medicare patients are invited to use our Medicare Part D Calculator. We encourage patients and caregivers to learn as much as they can and be full partners with the doctors on their medical teams. The conference sessions on Monday July 12 titled "Effective Self-Advocacy: Conversations on Being a Powerful Patient" and "How to Be Your Own Personal Healthcare Navigator" should be especially important to patients working to help themselves. |
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Wonderful conference
This was a great event. We met people both locally and from far away dealing with these same diseases. Additionally important was hearing from many experts in the field. I will attend these conferences in the future. Looking forward to receiving the e-mail from AA/MDS with the contact list so we can stay in touch with those we met! Good luck to all!
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Absolutely agree!! Loads of information, amazing, strong people (both patients and caregivers that we met), and messages of hope and support all weekend.
My only wish was that there were more opportunities (more down time) to speak with other attendees. The days were so packed with activities (all great!) but not so much time to just sit and chat with others, and share stories. Altogether, a rewarding weekend - very glad that we went. Will certainly try to go next year!
__________________
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11 |
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Gloria
Once they send out the contact list, would you be intersted in a local group? I was contacted by someone who lives near me, (who didn't go to conference), who is interested in forming a local group. I'm very intersted in this.
__________________
Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09 |
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Absolutely, Lisa, feel free to send me a private message.
Thanks, Gloria
__________________
Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11 |
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Hi Gloria-
I'm new to marrowforums and don't know how to send a private message.... Can you tell me how? Thanks.
__________________
Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09 |
#19
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Quote:
A more complete description is in the Frequently-Asked Questions section: How do I send a Private Message to another member? |
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