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  #1  
Old Sun May 23, 2010, 10:02 PM
Marrowforums Marrowforums is offline
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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)
Sun July 11: Main conference day (focus: the latest disease and treatment information, support workshops)
Mon July 12: Main conference day (focus: health and lifestyle issues)
Tue July 13: Capitol Hill Advocacy Day (more information)

Full Conference Schedule
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.

On the web: online registration
Conference Location:
Hyatt Regency Bethesda
One Bethesda Metro Center (7400 Wisconsin Avenue)
Bethesda, MD 20814
Phone: 301-657-1234
Fax: 301-657-6453
Google map
Hotel reservations:
Book by June 18 for the $125 conference rate.

By phone: 888-421-1442 or 301-657-1234 (mention group code "AAMDS Conference 2010")
On the web: online registration
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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  #2  
Old Sun May 23, 2010, 10:03 PM
Marrowforums Marrowforums is offline
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Tips from Marrowforums on getting the most out of the Patient Conference:


Before the Conference
  1. Register for the conference now while it's free for those staying in the conference hotel.
  2. Make hotel reservations now while space is available and you can get the conference rate.
  3. If you live in the Bethesda area it's cheaper to stay at home instead of at the hotel even though you'll have to pay for conference registration. Make sure to register for the conference by July 9.
  4. Let the AA&MDSIF know that you "opt-in" to the conference roster. You and other attendees will receive a list of the names, cities, and email addresses of attendees who opt-in.
  5. Let the AA&MDSIF know if you have special requirements, e.g., wheelchair accommodations, dietary restrictions.
  6. Pack comfortable clothes; the meeting is informal. Bring an extra sweater or jacket because conference rooms are often cold.
  7. Review the conference agenda and plan which sessions you and your family members will want to attend. Some sessions are concurrent so you'll have to pick one session from many. Some sessions are repeated so you'll get to pick the most convenient day and time. The downloadable Marrowforums Conference Schedule Planner (described in a post below) may help you.
  8. Make a list of questions for which you'd like to get answers at the conference. Take advantage of the experts who will be there. Remember, however, that conference question-and-answer sessions are not for personal medical reviews or second opinions; more general questions are appropriate. You can also leave written questions and let the AA&MDSIF get back to you with answers.
  9. If you have concerns about flying with low platelets or when susceptible to infections, talk to your doctor about reasonable precautions. Avoiding dehydration is good advice for all air travelers.
  10. Write down your doctors' contact information to bring with you in case you you need get in touch with them before you return home.
  11. Make sure you have enough prescription medicine for the duration of the trip.
  12. Expect some jet lag if traveling from the west. If possible, start adapting to an earlier schedule in the days preceding the conference. Otherwise, the Sunday morning sessions are going to feel brutally early!

At the Conference
  1. Attend the Pre-Conference Sessions. Much information will be presented and Saturday's sessions will get you off to a good start, especially if you were recently diagnosed or haven't been to a Patient Conference before.
  2. Take notes during conference sessions to help you remember what you learned but don't try to copy down each slide. Most slide presentations will be downloadable from the AA&MDSIF website.
  3. Divide and conquer. Where your schedule doesn't permit you to attend two conference sessions of interest, go to one and let someone else from your family go to the other. Trade notes afterwards.
  4. Talk to strangers. Make a particular effort to find other families sharing your disease, treatment, city, age group, etc. Trade stories and exchange contact information.
  5. Don't be shy about asking questions. Everyone will be learning and no question is a "dumb" question. When medical professionals talk to patients they sometimes slip into medical jargon. If you don't understand something there are probably other attendees wondering the same thing.
  6. Don't worry if you can't absorb everything you hear. Some patients who have attended the Patient Conference for years still learn more about these diseases each year.
  7. Be prepared to attend a Support Workshop without your spouse. It's the one chance that patients get to talk only to other patients and caregivers get to talk only to other caregivers, making it a unique oppotunity to speak frankly about your own concerns and difficulties.
  8. Pace yourself. If you don't have the stamina for a full morning, afternoon, and evening at the conference, take a break for a nap.
  9. If you have a medical emergency at the conference let the hotel and the AA&MDSIF staff know so they can help you find assistance. These medical facilities are near the conference hotel.
  10. Read the literature you collect to spark questions that you can have answered in person. The AA&MDSIF patient education booklets for AA, MDS, and PNH are excellent. If you don't already have the booklet for your disease and don't want to carry one home with you ask to have a copy mailed to you.
  11. Talk to exhibitors. It's a rare chance to meet representatives of the pharmaceutical companies who produce drugs for AA, MDS, and PNH and to learn about the patient support groups that also exhibit.
  12. Support the AA&MDSIF with a donation or by purchasing some of their merchandise.
  13. Say thanks to the conference sponsors. If you registered for free, they paid for your conference participation and meals.
  14. Appreciate that you've made it this far and are taking an active role in your care. Celebrate survivorship!

After the Conference
  1. Participate in Capitol Hill Advocacy Day (visiting the U.S. Capitol on Tuesday July 13). Continue the momentum at home. Contact your representatives to let your voice be heard about congressional support and funding for bone marrow failure disease research.
  2. If you can stay an extra day or two after the conference (or go early), take advantage of the conference location to visit the surrounding cities, especially the famous sites of Washington D.C., with your family.
  3. Review the literature you collected and your notes from sessions. Talk to your doctors about what you learned at the conference.
  4. Keep participating, learning, and supporting bone marrow failure disease fundraisers. Attend events in your city such as one-day seminars, the annual Walk for PNH, and the Hope, Steps & A Cure walks sponsored by the AA&MDSIF.
  5. Keep in touch with new friends and families you've met, either directly or through Marrowforums!
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  #3  
Old Sun May 23, 2010, 10:05 PM
Marrowforums Marrowforums is offline
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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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  #4  
Old Mon May 24, 2010, 11:56 AM
evansmom evansmom is offline
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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 (19); 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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  #5  
Old Mon May 24, 2010, 01:30 PM
Neil Cuadra Neil Cuadra is offline
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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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  #6  
Old Sat Jun 5, 2010, 05:40 PM
Marrowforums Marrowforums is offline
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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)

2007 Patient and Family Conference (Las Vegas, NV)

2008 Patient and Family Conference (Arlington, VA)

2009 Patient and Family Conference (Indianapolis, IN)
If you spot yourself in a photo and would like a full-resolution copy, let us know.
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  #7  
Old Thu Jun 10, 2010, 11:54 AM
Gloria J Gloria J is offline
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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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  #8  
Old Fri Jun 11, 2010, 03:56 AM
Marrowforums Marrowforums is offline
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Patient Conference news by the numbers:
29 days until the conference. The conference starts July 11, 2010.

200 patients and family members have already registered.

23 medical experts will be there.

38 sessions will be presented.

4 days left for free registration if you stay in the conference hotel.
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  #9  
Old Fri Jun 11, 2010, 04:49 AM
Marrowforums Marrowforums is offline
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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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  #10  
Old Sat Jun 12, 2010, 02:54 AM
Marrowforums Marrowforums is offline
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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
4:00pm-5:30pm: Conference attendees: Support workshops
5:00pm-6:30pm: Conference non-attendees: Walk registration
5:30pm-6:30pm: Conference attendees: T-shirt pickup
6:30pm: walk, followed by the Survivors Celebration and dinner
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  #11  
Old Tue Jun 15, 2010, 07:11 PM
Marrowforums Marrowforums is offline
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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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  #12  
Old Wed Jul 7, 2010, 02:19 AM
Marrowforums Marrowforums is offline
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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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  #13  
Old Thu Jul 8, 2010, 02:27 PM
Marrowforums Marrowforums is offline
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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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  #14  
Old Wed Jul 14, 2010, 01:57 PM
Lisa Z Lisa Z is offline
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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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  #15  
Old Thu Jul 15, 2010, 12:34 AM
Gloria J Gloria J is offline
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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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  #16  
Old Thu Jul 15, 2010, 07:52 AM
Lisa Z Lisa Z is offline
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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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  #17  
Old Sun Jul 18, 2010, 10:59 PM
Gloria J Gloria J is offline
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Absolutely, Lisa, feel free to send me a private message.

Thanks,

Gloria
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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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  #18  
Old Mon Jul 19, 2010, 09:19 AM
Lisa Z Lisa Z is offline
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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
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  #19  
Old Mon Jul 19, 2010, 11:47 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Lisa Z View Post
I'm new to marrowforums and don't know how to send a private message.... Can you tell me how?
The short version: click here to send Gloria J a private message.

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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