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.” 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 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: 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! 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 Marie
Coyle, President |
|
|