About The Founders Family

The Hypertrophic Cardiomyopathy Association is not just a cause or a hobby for Lisa Salberg, Founder and CEO of HCMA. It's her life. Lisa's grandfather died from sudden cardiac arrest at the age of 43. Her paternal great aunt suffered a massive stroke, secondary to HCM and died at 52. Her uncle died from sudden cardiac arrest at the age of 48. In the spring of 1995, Lisa's sister, Lori Anne Flanigan-Munson, began to experience congestive heart failure, which was not recognized or treated. In June she suffered cardiac arrest. She died at the age of 36, leaving behind two children ages 10 and 13 who have since been raised by Lisa and her family. Her father, Larry Flanigan, passed away in June 2008 after a lifelong battle of misdiagnosis and finally proper identification of his HCM. Lisa's niece, daughter, cousin and other family members also have HCM.

Lisa was diagnosed with HCM at age 12 after a murmur was detected at a school physical. Three weeks after her wedding, at the age of 21, Lisa suffered a stroke secondary to HCM. In 1997, she received her first ICD (implantable cardiac defibrillator), the only true protection against sudden cardiac arrest. She also takes an assortment of cardiac medications to control her HCM.

Professionally, Lisa has been a leader in human resource (HR) management for 17 years. Health insurance, employee benefits, business administration, event planning, employee counseling, analysis and general workflow management were the cornerstone of her career. She was a past President of the North Jersey Personnel Association and involved in many civic events and scholarship programs.

Since Lisa founded HCMA in 1996 as a national resource and support center for families affected by HCM, she simultaneously held a full-time job while managing the organization. Through her tireless efforts to successfully increase membership, awareness and funding for HCMA, in 2005 she left her career in HR to serve the HCMA full time. The HCMA has an active membership of over 5,700 families with HCM and provides information to the world via its website which serves an estimated 200,000 people per year.

Lisa's accomplishments including acting as course director for the Annual HCMA meeting which includes CME course and patient education for 12 consecutive years, co-authoring, Hypertrophic Cardiomyopathy for Patients, their Families, and Interested Physicians, first and second editions (2001 and 2006); authored articles for publication in medical journals, trade publications and has been interviewed and quoted in hundreds of articles and news pieces in the media including, NBC News, News12 NJ, ESPN - Outside the Lines, Quite Frankly with Steven Smith, Comcast-Real Life with Mary Amoroso, Chicago Tribune, Washington Post, The New York Times, Wall Street Journal, Star Ledger, Star Tribune, Sports Illustrated, Men's Health, EP Digest, Journal of the American College of Cardiology countless other regional and local newspapers.

Lisa has served on many panels, councils and represents the HCMA in several coalitions. American College of Cardiology panelist (2007) - ICD Recalls, Food and Drug Administration and Heart Rhythm Society (FDA/HRS) Policy Conference on Device Performance - panelist and task force member (2005), ICD Leads Conference- panelist (2007). Legislative sub-committee of the Sudden Cardiac Arrest Coalition, member of the Genetic Alliance, Sudden Cardiac Arrest Coalition, Personalized Medicine Coalition, National Coalition for Heart and Stroke Research, NHLBI Constituency Group, and American Heart Association Community Strategies Council (North East Region)

Husband, father, grandfather, fisherman, golfer, fireman and first aid/EMT

"Grief is like the wake behind a boat. It starts out as a huge wave that follows close behind you and is big enough to swamp and drown you if you suddenly stop moving forward. But if you do keep moving, the big wake will eventually dissipate. And after a long enough time, the waters of your life get calm again, and that is when the memories of those who have left begin to shine as bright and as enduring as the stars above."

Dad was a fisherman, a captain and a Keys fan - what better way to think of him then with this passage from Jimmy Buffett's book set in the Keys. - Excerpt from A Salty Piece of Land by Jimmy Buffett (Chapter 43, Page 474)

Eulogy Read June 8, 2008

Let me begin with heart felt thanks to all of our friends, neighbors and family who have extended such profound support and caring during these past few years and more specifically the past weeks. Hibernia Co 1, the many medical professionals, the dialysis center, the hospice workers, the friends on the internet, the neighbors, the old friends and simply everyone - Thank you does not even begin to say enough, we are humbled by your compassion.

My father's life should not be measured by how he left this world, but how he lived his life. Although my father's life was marked with the loss of so many he loved, he never forgot to enjoy life and LIVE it to the fullest. He lost his father when he was 17 shortly after he lost his aunt, both to hypertrophic cardiomyopathy, only we did not know it then. A few years later he lost his only sister to a car accident, he spoke of her fondly even 40 years after her passing. In 1990 his brother was taken in his late 40's and 5 years later we lost our sister Lori at the age of 36 both to HCM. While each of these took a toll on dad - he was filled with life, energy and a passion for adventure. He could smile in the face of pain, crack a joke and make just about anyone smile - even if the joke were a bit worn.

My dad was born in Dover and lived his entire life as a resident of Rockaway Twp. He was the oldest of 3 children, his parents Lawrence Sr. and Catherine lived in Hibernia, and his father was a founding member of Company 1.

My parents were married for over 52 years - 52, long, interesting, turbulent, fun, rarely dull and story filled years. In the past 2 years mom went above and beyond the call of duty to ensure dad had the best care, it was not easy on her and we appreciate all she did for him, and he appreciated it too.

Early in his professional life his adventurous side took over and he set out to forge his own path by becoming a sole proprietary and opening Viking Sewing Center - around the corner from the Singer store, his former employer - not a simple task by any means and it became a true family affair with both he and my mother as well as each of us kids taking our turns working Saturdays and summers in the store - some of us even had our very own "office" space in the back - also known as a play pen! Larry joined him in the business as a young man and continues there to this day.

We, his children, and grandchildren knew him like no others, we knew his sense of humor, his work ethic, his need for levity in a serious situation and his passion for real gourmet food, hot dogs, sausage and peppers, egg foo young, stuffed cabbage - all really HOT - with a really cold ginger ale! And let us not forget his attempt to convince his young kids that cheese cake and ketchup make the perfect desert!

He had a passion for fishing which began in the streams, brooks, rivers and lakes of NJ and took him to the Rocky Mountains to fish the Bitterroot and to the Florida Keys where he graduated to the position of "Captain Larry' aboard the "Lori - Anne" where he set out to Pickles and Molasses Reefs in search of yellow tail or on the bay to enjoy the beauty of the mangroves and catch some snappers and maybe a look at a manatee.

His passion for golf brought him to the Water Gap Country Club and the over the hill gang - he loved golf so much that one of us actually got married on a golf course as not to disrupt his Sunday tee time. All that golf did finally pay off when 2004 he got his first and only HOLE IN ONE! He was also great at organizing golf outings and did a great job on the two outings that were nearest and dearest to his heart - the fire department outing and the HCMA - Lori-Anne Memorial Outing.

Dad was a wonderful grandfather and spoiled his grandkids in so many ways! If it was not fishing trips on the Lori-Anne, or use of the golf cart (even when you were not quite 14!), it was hand made building blocks made with love (al be it a bit bigger then the ones from the store) or funny gifts at holidays (like jars of pickles), Your grandfather loved you all.

While family was keenly important to my father there was one other relationship that shared his heart - Company one and all the men and women who served with him, he loved you one and all. You will know just how much my dad liked you by his choice of greeting he gave you - the cruder the comment the deeper his affection - and you all know what I mean! To those who helped arrange the transport and to those who actually came to pick dad up from Cleveland in 510 there are simply no words to tell you how much that meant to him and to the family - you loved him as much as we did and we know that.

Two weeks ago while dad was in the hospital I had a meeting with the staff of Morristown Memorial and asked them to assist me in a program for the volunteer fire and first aiders of Rockaway Twp. They have agreed to conduct a free and confidential heart screening for all Rockaway Twp. volunteers on September 20, 2008. The idea for this originated from the loss of our dear friend's Keith Idland after his sudden passing this past year. Originally I thought it would be named in honor of my father and in memory of Keith - now the event will be in memory of 2 neighbors, brothers in the company and friends of 35 years - Keith and Larry's Heart Fair will help you each ensure that your hearts are strong, healthy and fit. Had someone done this for them when they were younger they may have both lived longer and or healthier lives.

I will share an email I received this morning from an HCM researcher in Minneapolis it really sums up my dad's life in just a few words.
"Your dad was a good guy who lived life the right way--with integrity, fairness and with love of family. It is the highest compliment."

I will share one story about my dad with you and ask 2 things in closing: First the story - one day when I was about 12 my dad stopped at the bus stop and asked - "do you have any tests today" I said "no" He then said - get in the car we are going fishing - it was a fun day - I can't remember if we caught anything - but I know we had to get home before the bus so mom would not find out!

The moral of the story - take the time to just say - the **** with the rules and go FISHING - life is simply too short.

In closing I will ask each of you to commit a random act of kindness in memory of dad he was a kind sole with a great big heart -

We loved him and will miss him -
You have earned your rest.
Rest in peace dad.

Lori -age 19 1978

Last photo taken - age 36 -1995

January 9, 1959 - June 16, 1995

Lori's life reminds me of a butterfly -beautiful and short lived. She has been gone since 1995 however her spirit is what drives the HCMA and because of her life and death so many have been helped.
Who was Lori? Lori was a fun, caring and compassionate person. She was also a bit scattered, a procrastinator, and did not always see the beauty and talent she possessed. Lori had been diagnosed with HCM since she was a teen but never let it dictate how she led her life. She married young and had 2 children, John and Stacey. After 7 years of marriage Lori divorced and became a hard working single parent. Unfortunately she had to endure much stress and hardship at the hands of her former husband. Her children were always the focus of her attention and she did a fabulous job raising them in the time she was given. Her children were her life and everything she did she did for them.
During her life she volunteered as a Sunday school teacher, Girl Scout leader, and was active in many community organizations and events. Lori had a smile that was contagious and calming. Lori had a way of making everyone feel involved and welcomed. She loved to host family functions and cook - even if it was not always the best cooking it was done with the best of intentions.
This is just a snap shot of my sister. I could go on for pages with funny stories and insights into who she was but all you need to know it that she was a wonderful person, she was very much loved and she remains missed by all who knew her.
In the months prior to her death we spoke of a need for HCM patients to be able to network, share information and to know we were not alone. 3 months after her death work began to start the HCMA. Lori lives on though the HCMA. You are reading this website because Lori lived and because she died - but mostly because she lived with heart!
"Forever in my heart"
This web site is dedicated to my sister, Lori Anne Flanigan-Munson. It was June 16, 1995 when we lost Lori to complications of HCM. Lori was a wonderful mother, a great friend to all who knew her, a much loved daughter and sister! I am proud to say she was my "big sister"! So here's to you Lori, I know if you were here you would like this! -

Lisa Salberg
Founder and CEO Hypertrophic Cardiomyopathy Association