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A JEWEL IS LOST... a Remembrance

For those that have been around the Scleroderma Foundation and the organizations that preceded it, the name Helene Flapan is instantly recognizable. Helene was key figure in the creation and development of what is now the Scleroderma Foundation Tri-State Chapter. She and her husband, Mark founded our organization in 1981 housing it in their Manhattan apartment. Her desire to fight the disease while making sure to educate and support patients is a fingerprint that remains central to our mission.

While Helene passed away in March, the legacy of she and her Husband Mark will live on. As Scleroderma Foundation CEO, Robert Riggs notes, “Helene, together with her husband Mark, was a visionary and a hard worker.  She saw an unmet need to provide help and support to people living with scleroderma and put her considerable talents and efforts into creating what is now the Tri-State Chapter.  It’s an amazing legacy and a shining example of what can be accomplished when passion and dedication combine to make a difference for others.”

Longtime friend and Tri-State Board member Estelle Randolph related that they became “close friends working on everything scleroderma. She gave her all. We had the same goal to find the cause & cure for Scleroderma!” She added that “I miss her terribly”.

Following is a remembrance by long-time friend and Scleroderma Foundation pioneer Marie Coyle…


                                  A  JEWEL IS LOST… a Remembrance

     With the passing of Helene Flapan, the Scleroderma Foundation has lost another jewel in its crown.  Helene and Mark Flapan were instrumental in the small group of dedicated workers who brought several groups together to form the current organization we now know as both the nationally and internationally recognized Scleroderma Foundation. Allow me to go back a bit so you can better understand the roles that Helene and Mark and the other “pioneers” played to give you a sense of what was involved in “growing” the organization as we know it today.

The Flapans had heard of the Scleroderma Association of New England and travelled to Boston to attend a meeting in the late ‘70’s.  They were interested in started a group like it in New York.  After that meeting, we communicated regularly by telephone sharing information and soon the TriState Group became a reality. Note that at the time we were called “groups” and not “chapters.”

At the same time, the idea was catching on and groups began springing up around the country.  As you might guess, we were all doing the same thing!  One morning - at 6:30 AM, I was awaken by a telephone call (no e-mail at that time!) from Gerry Kirshner, a Director of the Tri State Group.  Business man that he was, Gerry asked if New England would be interested in joining forces with New York.  I thought it was a great idea and suggested we ask all the smaller groups around the country as well.  The place that was most convenient to all was New York and the Flapans’ apartment became the meeting place where the Scleroderma Federation was born.  The groups involved were New York, New England, Delaware Valley, Chicago, California, Greater Washington and New Jersey. It was not until 1998 that the Scleroderma Federation merged with the United Scleroderma Foundation in California and the Scleroderma Foundation became its new name.

 It was at those many meetings that I got to know the real Helene Flapan – devoted wife,  loving mother and grandmother of Mark’s and her blended families, intelligent, articulate and a superb cook, to boot.   Add to this that Helene was the most relaxed person I have ever known. She taught relaxation classes and apparently they did her a world of good as well! She had no trouble speaking her mind at meetings but did so in such a calm and reassuring manner she brought many votes around to well thought-out conclusions. The first Federation office was in the Flapans’ home with Helene carrying most of the work load. Helene never complained except when the newsletter had to go to the Post Office.  I can remember her telling me on each occasion how she hated “schlepping” those big bags to the Post Office by taxi!  

Helene was the second president of the Scleroderma Federation, Win Reither of Greater Washington, the first.  I was the third, followed by Peter Meyer of New York.  After Peter’s death, I was then re-elected and that term ended with the merger in 1998 and the election of new officers.

Helene was Mark’s dedicated caretaker.  She saw to it that he ate well, rested, remembered to dress warmly, etc.  Mark ran along the lines of the “absent-minded Professor” but possessed one of the sharpest and most caring minds, I have known.  He was a perfectionist and wrote beautifully from the heart.  His newsletter articles, books and lectures have helped thousands of people with scleroderma.  We know, of course, who encouraged him, who proofread for him, who offered suggestions, and who made certain there were no interruptions to his writing time.

Helene entertained beautifully and served lunch to all at the SF Board Meetings usually served things she had prepared herself depending, of course, upon her work schedule.  We often exchanged recipes and I still think of her when I roast lamb and use her special rubs or her salad dressing recipes.

Helene still found time to spend with their children and often booked family parties and cruise events. She was extremely generous and loving with family but was also a no-nonsense person.

I have a copy of an invitation that she sent out for a family party that read: 
                                         Barefooted and bare topped will not be served.
                                           Dress:  Snazzy (not optional!)
                                          RSVP ASAP (by email)
                                          Just your presence, please!

She did have a way with words!

Everyone was surprised when Helene announced that she and Mark were moving to Florida.  The winters in New York were beginning to bother Mark and she thought he would enjoy the climate and it might even help the Raynaud’s condition in his hands which bothered him terribly.  At first Mark was somewhat reluctant to leave New York but after a few months he loved it.  Helene had designed his study so that he was surrounded by windows and outdoor greenery.  When my husband and I visited them, Mark told us he loved it.  He felt he was working in a botanical garden!  No more elevators to the 29th floor as in New York.

As an example of how well this couple merged in both thoughts and actions, Helene liked their swimming pool cool and refreshing.  Mark liked it warm. So, she swam in the morning while he sat and read, and he swam in the afternoon when the pool was heated and she sat and read!  Note that they each sat out while the other was swimming in case either needed help!

We were with Mark and Helene in California when he became ill and they flew back to New York where he passed on a few days later. After his death, Helene visited with us in Florida and we visited with her when she was with her son in Massachusetts.   In the last few years, we hadn’t seen much of each other but she always sent me her holiday newsletter at Christmas to bring me up to date on what was going on in her life.  She certainly didn’t let the grass grow under her feet as she travelled, often with a grandchild to show them the world; she cruised, again, often with family.  She had many friends, played bridge, joined clubs and managed to keep herself happy and healthy.  I don’t know exactly how old Helene was, but my guess would be she had probably reached ninety.  In this past holiday’s newsletter she wrote that she had moved into an independent living community and was having a great time going places with “the girls,” still playing bridge, and delighted that she didn’t have to drive anymore!  I was saddened to learn of her passing, but so glad that her last days were happy ones and to have had her as a friend.

And that, my friends, is the story of two dear friends, two “jewels,” who were so instrumental in founding a national organization to help those suffering from
scleroderma.  I could not write about one without the other.  They were together in life, together in their work, and are, undoubtedly, together once again!

                                                            Marie Coyle, President
                                                              Scleroderma Foundation/New England Chapter


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