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Lisa Salberg Find out more about Lisa Salberg
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  • meeting Thanks!!

    One more year and so many more wonderful memories. This year's meeting was a wonderful event made possible by the efforts of so many people. I wish to thank ALL who helped make this event a huge success.

    Thanks to: Kelly DeRosa for her wonderful organization, skills, and dedication. As I wrote in my thank you note to Kelly – we make a damn good team! We are all lucky to have Kelly with us at the HCMA and those who attended the meeting know why I think so highly of her skills and abilities!

    Thank you to Tim Stewart (and to Lynn for sharing him!) If not for his efforts on the website and his AV assistance the HCMA would not be where it is today.

    Thanks to ALL of our wonderful speakers! Drs. Barry Maron, Harry Lever, Joe Dearani, Martin Maron, Steve Ommen, Carolyn Ho, Steve Winters, Dan McLaughlin and our Panel Members for sharing and making this event so informative, constructive and interesting.

    Thank you to all of the volunteers Laura Murphy, Linda and Lynnette Gronemann, Staphania, Felix Levitt, Scott Popjes, and all those members who pitched in and helped out along the way!

    Thank you to the NJ Echo Society and Atlantic Health Care Systems -Holly Hamrah, Sue Moshier, John Whang, Dr. Grant Parr for assistance.

    Thanks to our board members!

    Lastly to my entire family Anne and Larry Flanigan, Lynn and Kevin Perry, Larry and Linda Flanigan ,Jen and Aaron (supplying your candles if you stayed at the hotel overnight), John and Stacey Titus, Honey Salberg and lastly to Adam and Becca for being supportive, caring and understanding while the meeting is being planned and underway.

    I am very tired and may well have omitted a thank you, which I will kick myself later for!

    Thank you to everyone - it was wonderful!

    Sincerely,
    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)

  • #2
    http://www.4hcm.org/gallery/2005HCMA

    check out the photos!

    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


    • #3
      I wanted to share these letters with you all. It is important to us all that the medical education portion of the meetings are well recieved. It sounds like it was!
      ****************************

      Sent: Sunday, June 05, 2005 10:28 AM
      Subject: HCM Meeting


      Dear Lisa,

      I wanted to tell you that yesterday's meeting was truly terrific. The speakers were superb. Dr. Parr did a fantastic job as moderator in a professional, personable manner. More importantly, your delivery was heartfelt. It need not be known that you have put an exceptional amount of time, energy and heart into this. It takes a special individual with the passion to help a cause as you so eagerly strive and achieve to do. It is amazing the unity you can provide to others.

      As a spectator, I observed how the patients see you as their foundation; a rock to which you provide strength, determination and guidance for those with HCM. It is all of these strong attributes that you have which make HCM strive for the best. It is quite inspiring to say the least. It was the sense of unity you give to others that ties it all together -- both on the patient and professional meeting section side. This is not an easy task to do.

      I wish to personally thank you from the bottom of my heart for your award. Your token of kindness is greatly appreciated and unexpected.

      On behalf of myself and NJSE, we are happy to have been a part of the meeting. I am glad I have had the opportunity to have met you and hope we can be of assistance in the future.

      In addition, you have a great team for the HCM. Everyone is so very passionate about what they do in making a difference. This comes from a topdown approach.

      I wish you much success in becoming more recognized as an organization. I am sure that with your diligence and perseverance, this will be a soon to be distant memory.


      Best Regards,

      Holly



      Date Sat, 4 Jun 2005 11:24 PM ( 21 hours 53 mins ago )

      Subject Thank you

      Dear Lisa,

      Thank you for the award. That was very thoughtful of you.

      I thought the Medical meeting went quite well. I was pleasantly surprised. The lecturers' content was updated and new enough that this year's meeting felt different -- and better -- from last year's. Although I didn't spend time at the patients/family meeting, the vibes I felt when I was in the rooms were both good and strong. You run a nice production at these meetings.


      The meeting clearly requires a Herculean effort by you and your staff. I'm
      hopeful you can enjoy the high that follows. You so deserve it.

      Talk, soon.


      Regards,
      John
      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


      • #4
        Lisa

        The pictures are great, it just made me sad i couldn't be there, I'm really going to push for it next year, i want to come and next year i think i going to be there

        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Good job Lisa and all the HCMA staff and volunteers! Sounds like a very successful meeting. I can't wait to get a debriefing of all that is new and exciting on the HCM front.

          Next year I will try and get over there from Australia. My wife's dad lives in Mount Pocono PA, so maybe we can time a visit with him so it coincides with the HCMA meeting.

          Paul
          Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

          Comment


          • #6
            Sounds like everyones efforts resulted in a very successfull and memorable conference. Thank you to all, for your hard work and dedication.

            You've proven once again that those involved in all aspects of The HCMA are without doubt one of the strongest union of empassioned people that could ever come together for a great cause. It is truly a tribute to all of us and to those we have all lost to HCM , that this group of family and friends and professionals continues to forge onward and together in the search of answers and means to assist those aflicted with HCM.


            The pictures are wonderfull , thanks for sharing them .

            Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              meeting

              Lisa, I wanted to add to the thank you letters. This was my third meeting and each year there is more interesting and informative info. The presentations were great and the comradere wonderful. We are already planning for next year...


              Like I said to you on Sunday, "you and the HCMA association are saving and improving lives every day".

              Thanks for everything,

              Chuck and Pebbie
              Chuck B

              An inch is a cinch, a yard is hard

              Comment


              • #8
                I think Pam summed it up perfectly....wish I could have attended this year but couldn't. Lisa, and everyone else connected with the HCMA are amazing!
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

                Comment


                • #9
                  Well, it was a great meeting, and a wonderful experience for all who attended. I was really impressed with the event that Lisa and Kelly manage to put together basically by themselves.

                  Sorry that many of you were unable to attend, but I have a feeling it will continue to grow and grow so you will have another chance to attend a wonderful event next year!

                  Thanks again to Lisa and Kelly for all of their hard work! I had a great time and learned alot. I hope that the golf outing went well today. You all must have already collapsed by now!

                  Cynthia
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                  Comment


                  • #10
                    Lisa

                    I remember putting on a 8 hour telethon and it was alot of work and commend everyone for there hard work you virtually start as soon as the last one is over and i hope the Golf outing was a success and hope to be at the next one

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #11
                      Cynaburst:

                      The golf out went great even thought we only got 12 holes of golf in before the thunder storm forced us to come in. The golfers still had a good time as was proven by the amount of money they paid for raffle tickets!!!

                      I would like to thank all the members who donated towards the golf outing. I don't have the complete list in front of me right now, but you all know who you are!!! In addition to numerous sponsors, we had a wide range of prize donatios. Everything from the movie posters that you donated, the wonderful art work that Pam donated, the afgan that Sharon's mom made, the disney tickets donated by toogoeffy (spelling??), the fresh ground specialty coffee from a member from Penn (sorry I can't remember his name right now . ) That is not the complete list, just the things that come to mind right now.

                      Lynn

                      Comment


                      • #12
                        Lynn,

                        It is you, Lisa, Kelley and the HCMA we should be thanking. I wish I had more to give! The HCMA has been there for me through some really rough times as of late and their is no monetary amount that could replace all of the kind words and acts of support I've seen here.

                        I envison one day that the HCMA will be right up there with the Other major foundations out there. The Forum already out does them but I hope one day our knowledge and power will be spread to everyone and the letters HCM mean something to people. I think it would also be a great thing if we had the support to sponser a scholarship for those outstanding young people who endure this disease but still want to go one in spite of it!

                        Just some day dreams, that hopefuly one day become reality

                        Mary S.

                        Comment


                        • #13
                          Thank you to Lisa, Kelly & everyone who worked so hard on this years meeting.

                          It was only 11 months ago that I found Lisa & the HCMA. I can not put into words what it has meant to Barbara & me.

                          Attending the annual HCMA meeting for the first time is truly a great experience. Getting to meet in person the people who have come to mean so much to us over the last 11 months. Also all the new friends, stories and faces that are not on the MB.

                          We walked away knowing we will be back next year.

                          Thank you, Lisa, for all you have done for all of us.

                          Stuart & Barbara
                          Cleveland Myectomy Club
                          August 31, 2004

                          Comment


                          • #14
                            Dear Lisa, All Hcm members and all Hcma staff,
                            I can't thank you all enough. Lisa it was a fantastic meeting and I learned a lot. I wanted to learn more about my HCM especially since I am waiting for my heart transplant.To all the people I met it was great talking with you and sharing stories. I believe The HCMA is an organization that educates teaches and shares stories and helps others. It's a blessing. Now I can't wait to receive my membership stuff in the mail!! Thanks so much
                            Kimberly K. Plaster

                            Comment

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