2114 SLE Newsletter - SLE Lupus Foundation

The
Loop
The Newsletter of The S.L.E. Lupus Foundation
WINTER
GALA 2004 raises record breaking $2 million
The 2004 S.L.E. Lupus Foundation’s Annual Gala, held in
November at the New York Marriott Marquis, set an alltime record – $2 million raised for lupus research and
patient services.The largest lupus fund-raising event in the
country, the event was attended by more than 800 guests,
including the Honorable Michael R. Bloomberg and Senator
Frank Lautenberg (D-NJ).
“Year after year, the S.L.E. Lupus Foundation continues to
set the pace.Tonight, once again, we’re setting the standard
and raising the bar in the fight against lupus,” Richard K.
DeScherer, president of the S.L.E. Lupus Foundation,
told Gala guests.
In This Issue
Gala 2004
Orange Lupus Awareness
Wristband Supports
“Life Without Lupus” 2
Foundation Expands
Support Services
in New York
3
Living With Lupus
4
Lupus Forum
5
Lupus Research
Institute Increases
Funding For Innovative
Research
5
Putting a face on
childhood lupus:
Expert addresses
SLE in children
6
Lupus LA Holds
Two Winning
Events
7
Clinical Trial Update
7
Using Your Retirement
For Charitable
Giving
7
Gala Honors Susan Golick,
Founder of the S.L.E. Lupus Foundation
Gala Honoree Susan Golick, with husband
Dr. Alan Wasserman
Susan Golick, diagnosed with lupus in 1970, was one of the
earliest champions for the lupus cause, when lupus was a
little known, often misdiagnosed disease. Susan, along with
her parents, Morrie Golick and Dorothy Newman, gathered a handful of people together in 1971, with the goal of
establishing awareness of lupus, supporting research and
creating resources for patients.
“I’m proud of what my family and I started. It is the strength of all of us working together that has enabled
the Foundation to carry out its mission. It is so gratifying to think about how much we have raised for
research, but we must keep going. Life without Lupus – that’s what we’re striving for,” Susan said.
Jessye Norman, Gala Honorary Chair, Served as Mistress of Ceremonies
Jessye Norman, renowned opera and concert artist, and a member of the Foundation’s Board of
Directors, served as Mistress of Ceremonies, opening the evening with a performance of
“Somewhere” from the award-winning, historic Broadway show, West Side Story.
Ms. Norman reflected,“Since I joined the Board, I have watched the Foundation grow from a successful
New York organization into a bi-coastal leader in fostering lupus research, advocacy and awareness.”
Lupus LA, the Foundation’s west coast division that brings Hollywood support to lupus research,
contributed significantly to the fundraising success by presenting a check for an additional $300,000.
The evening also included a surprise auction conducted by Bonnie Englebardt Lautenberg, wife of
Senator Frank Lautenberg, for six people to spend a day on Capitol Hill with the Senator, including
lunch in the Senate dining room.The auction raised $10,000.
more about the Gala on page 2
2005
1
...continued from page one
Gala Scientific Honoree: William A. Haseltine, Ph.D.
Recipient of the Scientific Award
was William A. Haseltine, Ph.D.,
who founded Human Genome
Sciences (HGS) in 1992, and is
now chairman and chief executive
officer of Haseltine Associates,
Ltd. and president of the William
A. Haseltine Foundation for
Medical Sciences and Arts.
Bonnie Englebardt Lautenberg, Senator Frank
Lautenberg, Gayle Hayman-Haseltine, and
scientific honoree Dr.William A. Haseltine
The Foundation thanks Lois and
Andrew Zaro and Carol and
Michael Weisman for generously
hosting the September “Gala
Kick-Off Party,” the start of a
successful fund-raising season.
3
2
6
1
Orange Lupus Awareness
Wristband Supports
“LIFE WITHOUT LUPUS”
A bright orange lupus awareness wristband, unveiled
at Gala 2004, is now available for widespread distribution.The “Life Without Lupus” wristband promotes
awareness of lupus, and urges the public to
Get into the Loop and learn about lupus.
Susan Golick, 2004 Gala honoree, worked with
fellow Board member Jennie DeScherer to design
the wristbands. “The wristbands were a huge hit at
the Gala, and lupus groups around the country are
joining the awareness promotion.We offer them to
anyone who wants to support Life Without Lupus.
All proceeds go to lupus research,” said Susan Golick.
The Foundation has long been active in promoting
awareness of lupus, with its successful Get into the
Loop campaign launched five years ago. Since then,
orange has become the recognized color symbolizing
lupus, and the orange loop continues to be a bright
and visible symbol for the disease, urging everyone
to Get into the Loop and learn about lupus.
To order quantities of 10 or more wristbands,
call the Foundation office at:
212-685-4118 or 1-800-74LUPUS, or order online
at www.lupusny.org.
4
5
1. Jessye Norman, renowned opera and concert artist 2. (From left to right) Michael
and Carol Weisman, and Lois and Andrew Zaro 3. Chris Paradysz with daughters
Allie (left) and Dani 4. Arty and Betsey Selkowitz 5. Robert and Francine Ravitz
6. (From left to right) Mischa and Cipa Dichter and Martin and Edith Segal
2
New York City Mayor Michael R. Bloomberg (left) is
presented with a “Life Without Lupus” wristband by
Susan Golick and Dr. Alan Wasserman (far right) and
Jennie and Richard K. DeScherer at the Gala.
Supporting the Lupus Community for 35 Years
Foundation Expands Support Services in New York
From crisis intervention, doctor referrals, and support groups
to educational materials, entitlement assistance and emergency
grants, the S.L.E. Lupus Foundation’s programs and support
services have helped countless patients and their families cope
with lupus for 35 years.The Foundation offers many different
types of support programs in the New York area, and works
in cooperation with hospitals and other health care centers to
develop and participate in new programs when the need arises.
Following is a list of support services in the New York area:
One-on-One Counseling
The Foundation offers a unique service in New York City: family
and individual counseling for people with lupus and their families.
Held at the Foundation’s midtown office, sessions are scheduled
with Enid Engelhard, CSW, Monday through Thursday, 9 am to 4 pm
by appointment only. Call the Foundation office, 212-685-4118.
Lupus Support Group at the Foundation office, 149 Madison
Avenue, New York meets 1st Tuesday of each month from
6-7:30 pm. Please call before your first attendance, 212-685-4118.
Multicultural Bilingual Support
The Foundation’s New York City Lupus Cooperative (NYCLC),
with centers in East Harlem and the Bronx, offers support
services to improve the quality of life for people with lupus
and their families in underserved New York City communities.
East Harlem Lupus Cooperative 307 East 116th Street,
1st Fl, New York, NY 10029, (212) 289-9811
Bronx Lupus Cooperative 1070 Southern Blvd.,
Bronx, NY 10459, (718) 620-2555
Private Consultations Referrals to physicians and social service
agencies, and assistance with housing, financial, educational and
interpersonal issues for people with lupus.
Bilingual Peer Support Groups
East Harlem Lupus Cooperative
Daytime: 2nd and 4th Tuesday of each month, 11 am – 1 pm
Evening: 3rd Thursday of each month, 6 pm – 8 pm
Call Maria Bonet, Lupus Outreach Counselor, 212-289-9811 or
e-mail: [email protected].
Bronx Lupus Cooperative
Daytime: 1st and 3rd Wednesday of each month, 11 am – 1 pm
Evening: 3rd Thursday of each month, 5:30 – 7:30 pm
Call Yasmin Santiago, Lupus Outreach Counselor, 718-620-2555, or
e-mail: [email protected].
Call the NYCLC for a new Calendar of Special Speakers or
download at www.lupusny.org.
Support Group at Urgent Care Center of Columbia
Presbyterian, 21 Audubon Avenue Between 166 and 167 Street,
2nd Floor. 1st and 3rd Thursday of the month, 6-7:30 PM. Contact
facilitator Adria Armbrister, 212-342-0160 to confirm dates
and times.
Brooklyn Support Groups
Brooklyn Support Group, Long Island College Hospital,
Hicks Street and Atlantic Avenue, 1st Floor Conference Room F,
Brooklyn. Meets 2nd Saturday of each month, 11am -1 pm.
Call to confirm. Contact Karen Andreozzi, 718-488-0550.
NEW
SUNY Downstate Support Group, 450 Clarkson Avenue,
Suite C, Brooklyn, NY. Meets Monday, 12 - 1 pm. Contact
Sema Terrabelo, RPA-C, 718-270-8216.
Long Island/Queens Support Group
Long Island/Queens Lupus Foundation ongoing support
group. For information call 516-783-3370 or Paula Goldstein
at 516-742-5687.
Telephone Peer Support & Chat Groups
LupusLine Telephone peer counseling staffed by trained volunteers, at Hospital for Special Surgery in cooperation with the
S.L.E. Lupus Foundation. Contact 212-606-1952 or 866-375-1427.
Charla de Lupus (Lupus Chat) Bi-lingual peer health education program staffed by trained volunteers living with lupus who
provide information and advocacy by telephone. Monthly teen and
parent lupus chat groups. Contact Hospital for Special Surgery at
212-606-1958 or 866-812-4494.
LANtern (Lupus Asian Network) Program Telephone peer
counseling staffed by trained Mandarin, Cantonese or English
speaking volunteers who have lupus. Contact Hospital for
Special Surgery at 212-774-2508 or 866-505-2253.
Workshops
S.L.E.Workshop at Hospital for Special Surgery, in cooperation with the Foundation. Meets the 4th Thursday of the month
from 12-2 pm, with Roberta Horton, Program Supervisor.
Lectures by health professionals followed by open discussion.
Call 212-606-1033.
There are no fees for these services.
Before attending any of these meetings please call to confirm dates and times.
3
Living
with
Lupus
Lupus is unpredictable with symptoms coming and going, mimicking other illnesses and
threatening major organs. This unpredictability brings with it a host of emotional, psychosocial
and lifestyle issues. Living with Lupus explores these topics through the personal stories of
New York-area people with lupus.
How has lupus affected your career and ambitions?
Jill Nicole Kuirsky
Jill Nicole Kuirsky first developed symptoms of systemic lupus
erythematosus (SLE) in 1988 at the age of 11. But it took another
three years of fatigue, joint pain, and headaches for the doctors
to correctly diagnose the disease. As with approximately a third
of people with SLE, Jill also has Antiphospholipid Syndrome (APS),
a blood clotting disorder that can sometimes lead to strokes,
multiple miscarriages, and other complications. In Jill’s case, APS
was diagnosed in her senior year of college when a near-fatal
blood clot developed in her leg and started to move up to her
heart. Now 27 years old and living in New York, the Michigan
native has found ways to stay upbeat about the future despite
ongoing disease flares. In this interview, she shares some of her
coping strategies as well as tales of her journey into adulthood.
You were diagnosed with lupus at an early age.
What was that like?
My pediatrician tried to get me in to see a rheumatologist. But
that wasn’t easy. At the time it was very difficult to find a doctor
who would treat lupus in a child, much less know how to talk to
one. Doctors at the University of Michigan eventually helped to
get the disease under control. I took powerful anti-inflammatory
drugs and began to feel better. But I also got sad at certain times
of the year, like the summer when all the girls would be going
outside and I had to stay in because the sunlight would cause a
disease flare. I couldn’t risk being put back on steroids. I hated
what they did to my body—mood swings, bloating, weight gain.
Those are tough at age 17. I also needed a lot of rest, but I was
a kid and wanted to go out and do things.
4
For many years, I was disappointed with school and life, because
I couldn’t do all the things that everyone else did.Then I realized
that I could make peace with myself by frequently adjusting my
goals. For example, from the time I was small I wanted to be an
actress.When I first moved to New York in my early 20s, I attended
the American Academy of Dramatic Arts and also worked part-time
as a trading assistant for an investment bank. But working in the
arts can be very frustrating and stressful, and the physical demands
of hours on my feet on the trading floor took a toll. I had to quit
both jobs after just three years. I didn’t have the stamina to work
long days or more than 30 hours a week. In 2004, once I realized
that I had to pace myself, I began my own theatre company:Aim
High Productions. It focuses on women’s issues. Having my own
company allows me to produce shows, ensures that I act regularly,
and enables me to raise money and awareness of the need to find
a cure for lupus. For steady income I use the cosmetology degree
I got in high school for my beauty business, Model Effects. I do spa
packages and makeup for events.
What makes you feel better when you are having
a hard day?
Exercise is a great way to deal with the pain, stress, and weight
gain (from medications) of lupus. I started running regularly three
years ago, and now average 25 miles a week. And to keep things
in perspective, I have my cute-all-over miniature dachshund,
Sir Edward Albee. He’s always there to greet me at the door.
That makes a big difference on particularly trying days. But the
best medicine of all is my friends and family. Sometimes it’s difficult
for them to understand my tiredness and pains, but just having
caring relationships in which I’m treated like everyone else makes
me smile.
What would you say to other children diagnosed
with lupus?
I had to fight my parents to let me do things like go to college.
They worried so much. But looking back, attending Central
Michigan University was the best thing for me because it made
me feel normal, like other kids my own age. So learn as much as
you can about the disease but don’t forget to live your life. Do all
the things you want to, and if you have a passion, follow it. I did.
You just need to know when to rest.
Throughout the year, the S.L.E. Lupus Foundation receives thousands of phone
and email inquiries from people with lupus, their families and others about
various aspects of the disease. In each LUPUS FORUM we include some of the
most common questions and answers.
Steroids and Weight Gain
Why do people with lupus need to watch their diet?
Many people with lupus take corticosteroids, or Prednisone.While
it is a helpful drug, it may have some undesirable side effects
including an uncontrollable appetite.The hunger you experience
is very real, not psychological. Cortisone suppresses the normal
activity of two of the body’s hormone-producing glands.
Consequently, the body’s delicate hormone balance is upset,
and a proper hormone balance is necessary to regulate appetite.
Can diet changes help prevent other complications
from steroids?
Yes, simple dietary modifications can help lessen the intensity
of side effects from steroid therapy. In addition to increase in
appetite, steroids may cause fluid and electrolyte disturbances,
elevated blood pressure, high blood sugar and osteoporosis.
Your physician can advise you about dietary modifications.
Lupus
Forum
What can I do to control my diet?
The first step is to develop a healthy meal plan. For most people
on corticosteroid therapy, finding a good balance of nutrients,
calories and your personal preferences requires a visit with your
doctor or a registered dietitian. Some things to keep in mind are:
• Plan ahead – plan your meals before you eat them,
not when you are hungry
• Control portions
• Don’t skip meals – eat regularly, three small meals a day
• Avoid concentrated sweets – occasional sweets are
all right, but a breakfast of sweet rolls is not
• Leave temptations behind - stock your cupboards and
refrigerator with only healthy foods, such as fresh fruits
and vegetables, and chicken and fish
Lupus Research Institute Increases Funding For Innovative Research
The S.L.E. Lupus Foundation’s research partner, the Lupus
Research Institute (LRI), is raising its individual novel research
grant awards to $300,000.The LRI has awarded more than $10
million in grants, supporting over 40 scientists at leading medical
institutions nationwide.
“Increased support for new science and imaginative investigators
—work that is essential for progress in lupus—is unlikely
to make it through National Institutes of Health (NIH) funding
mechanisms in the very tough fiscal climate that lies ahead,”
said Margaret Dowd, executive director of the Foundation
and president of the LRI. “That’s where the private sector
most needs to kick in.”
“Predictions of minimal growth in Fiscal 2006 NIH research budgets are a wake-up call—and at the LRI we hear it loud and clear,”
Dowd added.
The LRI was founded five years ago, with funding from the S.L.E.
Lupus Foundation, to support highly promising novel approaches
in lupus research. “Because the cause of lupus remains enigmatic
and curative treatments continue to elude us, the LRI has chosen
to support investigators who bring innovative and creative ideas
to the table,” said LRI Novel Research Taskforce Co-Chairman
Nicholas Chiorazzi, MD, Director of the North Shore-Long Island
Jewish Research Institute. “This affords the best opportunity to
reinforce and invigorate the research aimed at finding the cause
and cure for lupus.”
The LRI’s 2005 novel grant program seeks projects that deal
with less investigated aspects of the disease as well as applications
from investigators who may not have previously worked in lupus.
The heterogeneity of systemic lupus—affecting the kidneys, heart,
lungs, brain, blood and skin—spurs the LRI to reach out to such
specialties as cardiology, nephrology, neurology and dermatology
and to urge investigators in these areas to bring their best
thinking to lupus.
For more information on the LRI,
visit www.LupusResearchInstitute.org.
5
Putting a face on childhood lupus: Expert addresses SLE in children
Dr. Haines adds: “It’s very important that parents realize that
there is no one test that says you have lupus.The analogy that
I give all my patients is that when you go to a rheumatologist,
you come with a box of jigsaw pieces and we have to put the
puzzle together.”
There are currently 11 clinical criteria that allow doctors to best
diagnose children with lupus, Dr. Haines says.The criteria include
the presence of a neurologic disorder (such as seizures or psychosis not caused by drugs or abnormal body chemistry), photosensitivity, blood disorders including anemia, arthritis, kidney disease
and/or the inflammation of the serous membranes including those
that line the thoracic cavity and cover the lungs.The criteria also
comprise the presence of certain antibodies and perhaps a positive
antinuclear antibody (ANA) screen.Typically, 4 of the 11 criteria
need to be present to make a diagnosis of SLE in children.
Scene from Camp Sunshine
Help for Children with Lupus
Carole-Anne Bonner would not have chosen to develop lupus at
the age of 12. But today this 16-year-old honor student is making
the best of it by raising money for research and counseling newly
diagnosed children.
Like Carole-Anne, children and adolescents with lupus, comprise
about 15 percent of the approximately 1.5 million people with
systemic lupus erythematosus (SLE). In children, lupus typically
occurs at the age of ten and older.
“In kids, lupus is usually more florid than in adults,” says pediatric
rheumatologist Kathleen Haines, MD, chief of immunology in
the section of pediatric rheumatology and immunology at
Hackensack University Medical Center in New Jersey and an
associate professor of clinical pediatrics and medicine at New
York University School of Medicine in New York City.
“This may just be because kids may ignore the subtle signs such as
mild fatigue or painless joint swelling, so when you finally see a child
with lupus, they typically have more advanced disease than adults,”
she says. Dr. Haines recently presented on pediatric lupus at the
fifth annual professional education conference on lupus, co-sponsored by the S.L.E. Lupus Foundation and the New York Academy
of Medicine in New York City.
Carole-Anne helps newly diagnosed peers by talking to them
on-line about what she has been through. She also has a group
of friends with SLE from her experience last summer at Camp
Sunshine in Maine, a special week in August sponsored by the
S.L.E. Lupus Foundation that offers a retreat for children with
lupus and their families. In addition to the Camp Sunshine program, the Foundation’s Let Kids be Kids program helps families in
the New York Area by providing funding for activities that inspire
and encourage children diagnosed with lupus. Since it’s often
difficult for these children to feel “normal,” program activities
are specially designed to help boost young peoples’ confidence
and lift their spirits. Activities range from after-school lessons
in art, to music, swimming, or tai chi.
For more information about the Let Kids be Kids Program,
call the Foundation.
Diagnosis: SLE
In children and adults, SLE is a diagnosis of exclusion, which
means that everything else has to be ruled out first.That’s how
it happened with Carole-Anne, her mother JC recalls. “The symptoms were so obscure and then, boom, it was so obvious,”
says JC Bonner.
Scene from Camp Sunshine
6
Lupus LA Holds
Two Winning Events
Lupus LA held two events last fall that
increased awareness of lupus among the
Hollywood community and raised more than
$350,000 to support the Lupus Research
Institute’s novel research program.
Clinical Trial Update
Lupus Kidney Disease Trial
La Jolla Pharmaceutical Co. is recruiting patients for a clinical trial of its drug
candidate, Riquent® (abetimus sodium) for lupus kidney disease.The multi-dose
study is evaluating weekly doses of 100 mg and 300 mg of Riquent over a 12-month
period in lupus patients with a history of renal disease.Those patients between the
ages of 12 and 70 with a history of lupus nephritis who are currently stable off
Cytoxan or high doses of prednisone may be eligible. For more information, patients
should contact their physicians or visit www.ljpc.com, or contact one of the local
investigators, Dr. Richard Furie of North Shore University Hospital, Manhasset, N.Y.,
at 516-562-1370.
Immunomedics on Fast Track
Immunomedics, Inc. has received notice from the FDA granting epratuzumab Fast
Track Product designation for the treatment of patients with moderate to severe
systemic lupus erythematosus. Epratuzumab is a humanized monoclonal antibody
targeting B cell-mediated autoimmune diseases and non-Hodgkin’s lymphoma.
The company plans to initiate Phase III clinical trials in the first half of 2005.
Lupus and Heart Disease Study
Beverly Sassoon, Philip Neal, Carrie Brillstein, Marla
Paxson at the 4th annual Lupus LA Gala, “An Evening
of Love, Light & Laughter.”
A Lupus Research Institute-sponsored study examining why patients with lupus
have a high risk of blood vessel disease which can lead to a blood clot, heart
attacks or stroke, is recruiting individuals who have lupus and healthy controls
over the age of 18.The study, conducted by Drs. Robert Clancy and Jill Buyon
at NYU-Hospital for Joint Diseases, involves a one-time visit to the hospital
for a cardiovascular assessment and lab work. For more information contact
Angelique Shriky at 212-844-0209 or [email protected].
Using Your Retirement Plan
For Charitable Giving
There are many ways to make charitable donations, but some have greater tax
benefits than others. If you would like to make a bequest to a charitable organization such as the S.L.E. Lupus Foundation, and you are the owner of a retirement plan, you can minimize taxes due on the plan assets at death by naming the
charity as the beneficiary of the plan rather than making a cash bequest to the
charity. Because retirement plans used for charitable purposes are completely
deductible from the estate and are not subject to income taxes, you will avoid
both the federal and state estate tax on the plan assets and any income taxes
on the deferred income in the plan.
Actress Melissa Joan Hart at
the 2nd annual “Hollywood Bag
Ladies Lupus Luncheon.”
In Memory
The S.L.E. Lupus Foundation will greatly miss
our esteemed and beloved Board member,
Irving Wahl. Irv’s kindness, commitment,
generosity and support will be remembered.
He will always remain in our hearts.
Gifting plan assets as part of your charitable “gift of a lifetime,” will permit you to
allocate other assets to your family members that will not be subject to possibly
onerous income tax rates, thereby increasing the amount of money available to heirs.
After you have discussed your estate plans with your advisors and family members, the procedure for making a gift of your retirement plan is simple. Request
a beneficiary change form from your plan administrator, and indicate the amount
or percentage of assets you wish to use for charitable purposes.You are at liberty
to change your beneficiary at any time in the future.
As with other planned gifts made to the S.L.E. Lupus Foundation, retirement
assets qualify you for membership in the Golick Family Legacy Society. If you are
interested in hearing more about gift-planning options, please contact Andrea
O’Neill at the Foundation (212-685-4118, ext. 243).
7
The
Loop
S.L.E. Lupus Foundation
330 Seventh Avenue, Suite 1701
New York, NY 10001
Phone 212-685-4118
Fax 212-545-1843
E-mail: [email protected]
Website: http://www.lupusny.org
Officers
Richard K. DeScherer, President
Susan Golick,Vice President
Robert Ravitz,Vice President
Bruce Cronstein, MD, Chairman, Medical Advisory Board
Margaret G. Dowd, Executive Director
The Loop is published by
the S.L.E. Lupus Foundation
and is distributed to all members.
Disclaimer:The opinions and statements expresed by the
authors or contributors to this publication do not necessarily
reflect the opinions or positions of the S.L.E. Lupus Foundation.
GET INTO THE LOOP!
GET ONTO THE WEB!
Have you visited www.LupusNY.org lately?
Orange Lupus Awareness
Wristband Supports
“LIFE WITHOUT LUPUS”
article on page 2