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2003 Meeting agenda

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Lisa Salberg Find out more about Lisa Salberg
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  • 2003 Meeting agenda

    UPDATED 4/15/2003
    Where:
    Morristown NJ - The Westin Hotel
    June 6-8 2003
    Agenda: Friday June 6, 2003

    Agenda: Friday June 6, 2003 Registration opens at 4:00pm and runs through 8:00pm

    6:30pm-8:30pm Welcome and opening remarks dinner will be served at 7:00pm

    8:30pm-9: 30pm Fund raising workshop –How can you help the HCMA. This is a brief discussion group on ideas as to how to run a fundraiser that will raise awareness of HCM as well as much needed funding to continue our work.

    Saturday, June 7, 2003
    8:15-8:55am Registration

    9:00am Welcome address by Lisa Salberg, President and Founder of the HCMA

    9:30am Dr. Barry Maron, Director of the HCM Clinic, Minneapolis Heart Institute Foundation, MI: An overview of HCM: A history, an explanation and a look to the future. Athletics and HCM - The real story on what is best for those with HCM

    10:10amDr. Mark Sherrid, Hypertrophic Cardiomyopathy Clinic, St. Luke’s Roosevelt Hospital Center, NYC: Beta Blockers, Calcium Channel blockers, diuretics, antiarrhythmics, - What do they do and how to know which is best for each person? And What drugs to avoid with HCM?

    10:40am-10: 55am Break

    10:55amDr. Stephen Winters, Director of Electrophysiology, Morristown Memorial, NJ: The use of implantable defibrillators in HCM. What is new in the EP world for those with HCM New treatments for a-fib?

    11::25am Dr. Harry Lever, HCM Clinic - Cleveland Clinic, Cleveland OH. :Septal reduction Myectomy and Alcohol Septal ablation how to know which is right for you?

    12:00 noon Lunch -Buffet style- (During lunch our panel will answer your questions.)

    1:15pm Dr. Martin Maron, The HCM Clinic at NEMC - Tufts, Boston MA :The meaning of obstruction in 2003.

    1:45pm Dr. Carolyn Ho, Brigham and Woman’s Hospital - The Seidman genetics lab at Harvard, Boston MA: The current standing of genetics in HCM - what do we know, what do we think we know and what does it mean to families with HCM.

    2:15pm-2:30pm Break


    2:30pm Dr. Steven Oman - HCM Center at the Mayo Clinic, Rochester, MN: The role of an HCM specialty center for the evaluation, treatment and care of your HCM.

    3:00pm Dr. Robert Pensack: Hope and HCM: The importance of hope in living with a life threatening disease.

    3:30pm Lisa Salberg: HCM and the workplace and your rights as a patient - Communication skills that will improve your employers understanding of HCM and your relationship with your health care provider.

    4:00pm Panel will be open for questions

    4:45pm Meeting closes for the day.

    6:00pm Dinner social - - Time to spend with each other as well as some of our gracious speakers. (Additional fee of $25.00 per adults -children $10.00)
    7:30pm Regional Representatives - -How to become an official Regional Rep of the HCMA. Those interested in attending sign up at the registration desk.

    8:00pm How to run a heart screening event in your community: Presented by Sharon Bates

    ***The Youths with HCM group will be participating in various activities throughout the day. Some of our speakers will be having mini talks with them. A group leader will be monitoring the activities and maintaining and environment of learning and fun!

    Sunday Morning:
    10:00am-12:00 Brunch –No agenda just for fun.

    HOUSING INFORMAITON:
    The Westin Morristown
    2 Whippany Road
    Morristown, NJ USA 07960 (973) 539-7300 fax: (973) 984-1036. I-287, southbound, exit 36, left lane to light, left to stop and left 1 mi. to hotel; northbound exit 36A through Morris Ave., 0.3 mi. following signs. No pets. Rates: $79-$169. **Special room prices MENTION HCMA meeting** 200 rooms, 6 stories. Interior corridors. Dining room, restaurant. Free and pay movies; 8 efficiencies, cable TV, non-smoking available, area transportation. Recreation: sports court, outdoor pool, playground.
    How to Register: Fax to 973-983-7429, mail to the HCMA or call in to the HCMA office at 973-983-7429 – EMAIL to [email protected]
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Should we begin making hotel arrangements now? or will the price of the registration include the hotel room? I assume more details will be posted as they become available.

    Thanks and looking forward to June!
    Thanks, Tim
    Forum Administrator

    Comment


    • #3
      hotel

      Last year, the hotel was up to you. The registration fee for attending the meeting is really, really cheap.

      Lisa hasn't told me it would be any different this year and it probably isn't.

      Lisa?

      S

      Comment


      • #4
        Hi...

        Meeting fee is $35 per person and does not include hotel accomodations. The hotel has given a discounted rate for a block of rooms...just make sure to mention that you are with the HCMA. See you all in June!
        Ellen
        HCMA

        Comment


        • #5
          Fyi ...

          While you can make reservations online, it looks like you need to contact THE WESTIN MORRISTOWN directly (Phone 973-539-7300) for the discounted rate of $79 / night. Also, the "Rate Plan" for this rate is "HYPERTROPHIC CARDO" as they did not recognize the term "HCMA".
          Thanks, Tim
          Forum Administrator

          Comment


          • #6
            Re: 2003 Meeting agenda

            I'm new to the HCMA community and I'm not quite sure how to post a message, other than replying, that is. I'll work on it. As for the HCMA get together in NJ, count me in! Sounds like a good time. I haven't met anyone that has HCM (besides myself, of course) and so I look forward to being able to ask questions and talk with someone who knows exactly what I mean. Now to find out how to post a message...
            I\'m a 23 year old male who enjoyed an active lifestyle. I no longer have that luxury, but I am dedicated to finding a way to get it back. Feel free to contact me for any reason.

            Comment


            • #7
              Re: 2003 Meeting agenda

              Hi Mike..

              If you have not already done so..please send your name and address to us so we can make sure you get notifications about the meeting. Thanks..

              Ellen
              Ellen
              HCMA

              Comment


              • #8
                Re: 2003 Meeting agenda

                Please re-read the agenda - changes have been made!
                Knowledge is power ... Stay informed!
                YOU can make a difference - all you have to do is try!

                Dx age 12 current age 46 and counting!
                lost: 5 family members to HCM (SCD, Stroke, CHF)
                Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                Therapy - ICD (implanted 97, 01, 04 and 11, medication
                Currently not obstructed
                Complications - unnecessary pacemaker and stroke (unrelated to each other)

                Comment


                • #9
                  Re: 2003 Meeting agenda

                  dear lisa,

                  for those of us who can't make it to this wonderful sounding meeting (how i wish i lived in new jersey!) will there be any way to access the text of the doctors' talks later?

                  thanks a lot!

                  mongo

                  Comment


                  • #10
                    Re: 2003 Meeting agenda

                    Yea Mongo Thats a great question!!Rich
                    Allways remember you cannot control the wind!!
                    However you can adjust your sails!!

                    Comment


                    • #11
                      Re: 2003 Meeting agenda

                      We are working on this as we speak...a generous member has offered $1,000 toward taping of the meeting - so we may be able to pull this off.
                      Any others willing to help out??

                      Lisa
                      Knowledge is power ... Stay informed!
                      YOU can make a difference - all you have to do is try!

                      Dx age 12 current age 46 and counting!
                      lost: 5 family members to HCM (SCD, Stroke, CHF)
                      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                      Therapy - ICD (implanted 97, 01, 04 and 11, medication
                      Currently not obstructed
                      Complications - unnecessary pacemaker and stroke (unrelated to each other)

                      Comment


                      • #12
                        Re: 2003 Meeting agenda

                        hi lisa,

                        unfortunately i don't have the means to be anywhere as generous but i was thinking that if the doctors have prepared notes, all we would need is a copy of their addresses that could be posted on this site. getting the transcribed q &a later would be a bonus but just getting the addresses themselves would be great.

                        thanks for all your work!

                        mongo

                        Comment


                        • #13
                          Re: 2003 Meeting agenda

                          It is not too late to join us!
                          We are expecting between 70-90 members, 8 speakers, and NOW a new addition!!! Zargis Medical a division of Siemens Medical will be on site to allow anyone interested the oppurtunity to participate in a non-invasive new test that will record heart sounds. This new test is pending FDA approval and the company is very interested in its potential application it ability to identify the heart sounds of those with HCM. They have already ID'ed the sounds of those with obstuction. As we know those with obstruction only make up 25-30% of those with HCM, therefore if this test is going to have any value it will need to be able to pick up the sounds of those with NON-obstucted HCM.
                          I meet these people in November at the AHA and they are very excited about the oppurtunity to record those with HCM. Recordings will be done in a private solon and take about 10 minutes. You will be given copies of the protocol and consent information at the meeting.

                          Here at the HCMA we are looking to the future...this test may well be a key to help us uncover many cases of HCM and help big those affected to proper care!

                          Hope to see you soon!
                          Lisa
                          Knowledge is power ... Stay informed!
                          YOU can make a difference - all you have to do is try!

                          Dx age 12 current age 46 and counting!
                          lost: 5 family members to HCM (SCD, Stroke, CHF)
                          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                          Therapy - ICD (implanted 97, 01, 04 and 11, medication
                          Currently not obstructed
                          Complications - unnecessary pacemaker and stroke (unrelated to each other)

                          Comment


                          • #14
                            Re: 2003 Meeting agenda

                            Looks like we are setting records here!!!!!!!!!!!

                            This years meeting looks like it will be the biggest EVER! So far it looks like 100 participants! Last year we were at 72! I expect a few last minutes to pop in...so who knows how many we will end up...the more the merrier!

                            If you have not yet signed up it is NOT TO LATE!

                            Hope to see you next week!

                            I am so looking forward to meeting you all!!!

                            Lisa
                            Knowledge is power ... Stay informed!
                            YOU can make a difference - all you have to do is try!

                            Dx age 12 current age 46 and counting!
                            lost: 5 family members to HCM (SCD, Stroke, CHF)
                            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                            Therapy - ICD (implanted 97, 01, 04 and 11, medication
                            Currently not obstructed
                            Complications - unnecessary pacemaker and stroke (unrelated to each other)

                            Comment


                            • #15
                              Re: 2003 Meeting agenda

                              With less than one week to go I am not sure WHO is more excited about this meeting...the HCMA, the participants or the speakers!
                              This is going to be a wonderful event with a great deal of information FOR ALL!

                              I spoke to a few of our speakers over the past few days... they are all very excited to meet you all and HEAR what YOU have to say! This is an oppurtunity for "we the patients" to let the researchers know what we need to have a better quality of life... THEY ARE LISTENING!

                              I look forward to seeing you all next week. I will not be on the board much between now and the meeting so please understand if I do not respond to your posts too quickly!

                              Be well,
                              Lisa
                              Knowledge is power ... Stay informed!
                              YOU can make a difference - all you have to do is try!

                              Dx age 12 current age 46 and counting!
                              lost: 5 family members to HCM (SCD, Stroke, CHF)
                              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                              Therapy - ICD (implanted 97, 01, 04 and 11, medication
                              Currently not obstructed
                              Complications - unnecessary pacemaker and stroke (unrelated to each other)

                              Comment

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