[2002 Agenda for Annual Meeting]

Author: Ellen (---.dyn.optonline.net)

Date: 05-08-02 11:52

Welcome to the HCMA's 5th Annual Meeting!

A day of learning, friendship and support!

HCM Meeting

Held at the Westin Hotel

2 Whippany Road, Morristown, NJ 07960

For Reservations: 973-539-7300

Room rates: $75.00

(20 Miles from Newark Airport)

Meeting Fee: $25.00 per person, children under 16 Free

HCM Meeting Agenda

Friday May 31, 2002

5:30-6:30 Registration

A light buffet dinner will be served from 7:00-8:30. This is an informal gathering and an opportunity to meet others with HCM and get ready for Saturdays' events

Saturday June 1, 2002

8:30-9:30 Registration

9:30 Lisa Salberg - Founder and President of the HCMA

Welcome Address

10:15 Dr. Barry J. Maron, Director of HCM Clinic Minneapolis Heart Institute Foundation

OverView

What is Hypertrophic Cardiomyopathy (HCM)?

When and how to screen for HCM?

HCM and competitive athletics, when to say no.

. The state of genetics in HCM

What do we know & what does it mean?

11:00 Dr. Mark Sherrid, St. Luke's Roosevelt Hospital

Management of symptoms of HCM

. Drug therapy for HCM . What drugs to avoid if you have HCM

. What is "end stage" or "Burnt Out" HCM ?

11:30 Lee Rouson, Former New York Giant & Motivational Speaker

12:30 Lunch

1:30 Dr. Stephen Winters, Morristown Memorial Hospital

Atrial Fibrillation, can it be avoided? What to do about it

Implantable defibrillators

What is involved with the implanting? .

Are there things I should avoid living with a device?

2:00 Kimberly Karpack, Family Counselor

Living with HCM, a family affair

2:40 Dr. Martin Maron, Tufts, Boston, Massachusetts

The future of HCM- where are we going and how will we get there?

3:00 SPLIT Speakers;

1. Lisa Salberg

The state of Health Care

Things to know about living with HCM & working with Insurance Providers

2. Kim Karpack (for young adults, teens & children with HCM) Ages

10 - 21 years - A discussion group for kids only

A unique opportunity for young adults & teens to discuss issues facing them.

This group will be run by Kim Karpack & include brief talks from adults who were diagnosed young & how they dealt with HCM.

3:40 Questions & Answers

For entire panel

4:30 Meeting Ends

5:30 Optional Dinner

(additional fee $25 per adult, $10 per child) - sign up at meeting

Monday June 3, 2002

The Lori Flanigan

Memorial Golf Outing

Held at Picatinny Arsenal Golf Club in Rockaway Township (25 minutes from Morristown)

$115.00 per Golfer

12:00 Shotgun Start

Call HCMA for more details!

HCMA

P.O. Box 306

Hibernia, NJ 07842

973-983-7429

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: Steve (---.proxy.aol.com)

Date: 05-08-02 22:29

Will there be a video yape of this meeting available later for those of us whom cannot make the trip to the meeting? I sure hope so, sounds like a great agenda with many good topics of discussion.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: Lynn Perry (---.pica.army.mil)

Date: 05-09-02 15:53

Any of you attending the HCMA meeting on June 1st who happen to be golfers, please stay an extra couple days and join us for the Golf Outing. This is one of our major fund raising acitivties for the HCMA. It's also alot of FUN!!!

Sponsors and prize donations still be accepted. Please contact me at [email protected] or contact the HCMA office if you need any additional information regarding the golf outing.

Please remember, we need your support now, so the HCMA can be there to support you in the future.

Thanks,

Lynn Perry

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: Ellen (---.dyn.optonline.net)

Date: 05-14-02 12:48

Hi Steve..

Sorry but the meeting is not going to be taped this year. It is too expensive.

Ellen

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: Steve (---.proxy.aol.com)

Date: 05-14-02 14:23

Hi Ellen,

That's really too bad. Is there any other thoughts on collecting info from meeting that could be available to us that can't make it? How about audio recordings? Couldn't some volunteer (nonprofessional) just video tape and make copies available for a fee as needed? Some of the subjects are so interesting and I'm sure very informative. To have such a gathering of HCM specialist in one spot and not to be able to pass on their knowledge is such a shame. I know there is a lot of expenses involved with all HCMA activities, but I would think sharing this meeting info with HCMA members should be right up there in a list of priorities. Please consider just cassette recording even. I've got to believe that others would purchase tapes of this meeting.

Sincerely, Steve (on west coast)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: Ellen (206.187.100.---)

Date: 05-14-02 16:22

Hi Steve..

We absolutely agree with you and one of our top priorities is to share as much information as we can, but we do not have enough funding for a project like this. As you know we are a not for profit organization and are in need of funding desperately. We have tried in the past to video tape, etc. the meetings and have not been able to sell enough of them to cover the expense. Even when we get a "reduced rate." We are always looking for volunteers...but there never seems to be enough of them.

Lisa does try to "re-cap" as much as she can in the newsletters. I will pass on to Lisa the suggestion of tape recording the meeting...maybe she can come up with another idea.....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: Lynn Perry (---.pica.army.mil)

Date: 05-15-02 15:51

Ellen has a valid point. The HCMA is not a finaicially rich group. Lisa has worked hard to come up with what funding she has been able to obtain. Everyone on this message board has been a direct beneficiary of the funding that she has received to date.

The HCMA has tried video taping the meetings in the past, both with non professional volunteers and professionally. In order to assure the speakers can be understood it really takes a professional to tape the meeting. It did not work out very well when it was done with a non-professional volunteer. There were problems with sound and picture qualities. Doing just audio is hard because there are view graphs and power point presentations that are part of the lectures. Without the graphics the audio portions would be very hard to follow.

What would be FANTASTIC is if we could find a professional volunteer who could do the work for free. If anyone knows of a professional who would be willing to volunteer their time and equipment please contact the HCMA office. Or, if someone is willing to donate the funds required to hire a professional that would be great too.

The HCMA is here for the benefit of all those with HCM and their familes. But the HCMA needs the financial support from all of you in order to help you.

Lisa has done wonderful things with the HCMA organization, but if there is one that she HATES doing, that is pushing for donations. She has kept membership fees low in an attempt to make sure the HCMA is accessible to all those in need. She keeps the cost of the annual meeting very low for the same reasons. But, for the HCMA to be free to do things like get quality videos of the annual meeting, it takes MONEY.

OK, I'll get off the soap box now.

Thanks,

Lynn Perry

p.s. Still room for sponsors, donations, and golfers for the HCMA Annual Charity Golf Outing that is being held on June 3rd.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Re: 2002 Agenda for Annual Meeting]

Author: lisa (208.47.172.---)

Date: 05-20-02 15:15

OK for those who did not know this Lynn Perry is my big sister. Having said that... She is right, we try our hardest to make the meeting as accessable as possible. I do have some video tapes of the 2000 meeting still available for $45.00 per set of 3 tapes for anyone interested. The include Dr. Maron, Dr. Sherrid and several other speakers including myself. The data is still accurate just the newer research is not included.

If anyone wants to sponsor the video taping the base cost is $2500 then tapes are a few dollars a piece to reproduce.

Just for the record, I have not made the money back on the 2000 meeting tapes yet, and frankly I do not expect to.

We try our best but are still growing...and could use help...and Lynn is right I hate asking for money...but if you have any rich friends let them know we could us the help!

Best Wishes,

Lisa Salberg

President