Page 13 - SFHN March 2018

Cover Story: Scleroderma Foundation: Education, Support, Research Lynn Cancer Institute
Director of Oncology
Continued from page 1
Support Services Receives
turns out a lot of scleroderma patients are and found the Southeast Florida Chapter
at risk for pulmonary hypertension, and and found they did an annual walk, and National Honor
then I got involved in their lives in terms of we thought we should get involved with
taking care of their other diseases. that."
Eventually we were seeing literally hun- Lehmann did his first walk in 2012 Darci McNally,
dreds of patients with scleroderma, so we and has continued since then. He said MSW, LCSW,
gathered a group of physicians in various that in addition to the annual walks, he OSW-C, Director
specialties that have expertise in handling has helped to organize fundraisers that of Oncology
scleroderma patients, and listed our servic- include such items as hotel stays and pri- Support Services
es with the Foundation because we were vate charter boats. "Key West is very and Community
involved in research." involved and we've done very well. We Outreach at Boca
The "Foundation" is the Scleroderma Ferne Robin Martin Lehmann take that up to the Southeast Chapter and Raton Regional
Foundation, whose Southeast Florida they really appreciate what we do." He Hospital’s Eugene
Chapter is led by Executive Director Ferne Robin. She said its also joined the board in 2017. "When you're affected, you get M. & Christine
mission of education, support and research is extremely impor- involved," he said simply . Darci McNally E. Lynn Cancer
tant, and funding is absolutely vital. "Not many doctors are famil- There is no cure for scleroderma, but as Dr. Rahaghi said, "In Institute, has
iar with scleroderma, so we're trying to raise funds in order to medicine there are very few things for which there is a cure. What received the Lane W. Adams Quality of
have more education and awareness events for the patients and we do is try to halt the disease and improve the patient's condi- Life Award from the American Cancer
the communities and the doctors. The Foundation also invests at tion. One thing we tend to do is treat the patient more aggressive- Society. McNally was recognized and
least $1 million each year, on average, in cutting-edge research to ly , because we're more aware of the up-to-date data, and new and rewarded for her leadership in providing
discover, understand, and overcome the cause, symptoms, and experimental treatments." care and support to patients at the Lynn
disabilities of scleroderma." While the symptoms may be difficult to recognize at first – skin Cancer Institute through support groups
The Foundation held its annual fundraising walk recently , tightness, coldness in extremities, shortness of breath, difficulty in and one-on-one therapy.
although donations were down this year from last. Hurricane swallowing – Dr. Rahaghi said that "unless you have a really sub- McNally has spearheaded the creation
Irma had an impact and inclement weather held down the num- tle form of this condition, very soon you will be presented symp- of a number of signature events and
ber of walk ups. "Financially it was not successful, but emotion- toms that are hard to ignore." He believes the problem has not programs designed to address the myri-
ally it was, and the whole spirit of it was extremely successful. We been with diagnosis, but rather with the belief that little can be ad needs of those battling cancer. Most
can't count everything in dollars, we have to count it in the done for the patients. notably, she developed the League of
impact we have on the people who suffer." Dr. Rahaghi pointed out that continuous incremental improve- Ribbons at the Institute, which offers a
Robin is grateful for the efforts of people like Martin Lehmann, ments have been made in understanding and managing scleroder- host of different initiatives such as pro-
whose daughter passed away from scleroderma in 2007, and who ma, but he has seen the lack of aggressive management by physi- viding gift cards for groceries and gas,
has been involved with fundraising and support for the cians, and the fact that once diagnosed, patients sometimes tend health and wellness programs for
Foundation ever since. to ignore referral centers that may be available to provide the patients and the community –at –large
Lehmann, who lives in Key West, said after his daughter passed comprehensive and sometimes difficult care that they need. and guided imagery, yoga, and massage
he was looking to do something for the Scleroderma Foundation, Robin would agree – that's why funding for education and sup- therapy for patients in treatment.
but didn't know about the Southeast Florida Chapter. "We port is so important. Concurrently, she developed the Run for
weren't aware that it was there, and we were trying to put some- the Ribbons, a highly successful 5K and
thing together down here. A friend of ours did a Google search For more information, visit scleroderma.org one-mile Run/Walk that helps to fund
the League’s offerings.
or call (954) 798-1854.

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