Spring 2011 - What`s Happening at Lupus LA

LUPUS LA
West Coast Division of the S.L.E. Lupus Foundation . Member of the Lupus Research Institute National Coalition . Spring 2011
Welcome to the First FDA-Approved
Drug for Lupus in 50 Years!
On March 9, the U.S. Food and Drug Administration approved
BENLYSTA® (belimumab) for adults with active systemic
lupus receiving standard lupus therapy, which means we have
the first new treatment approved for this chronic autoimmune
disease in more than half a century! Human Genome Sciences
developed the drug along with GlaxoSmithKline.
It’s a historic moment. “This is a major breakthrough in the
care and treatment of lupus, and one that I have been waiting
for, for 30 years,” said Lupus LA Founder Daniel J. Wallace,
M.D., a top enroller in the two major clinical trials of Benlysta.
Out We Reach—To All Angelinos
with Lupus
In 2010, Lupus LA Reached Tens of Thousands by:
• opening new support groups
• hosting exciting fundraising events
• creating a great fundraising team through the LA Marathon.
And now in 2011, thanks to donor support and the generosity
of Congresswoman Lucille Roybal-Allard, we launched the
Lupus Cooperative of Los Angeles (LCLA) at the Urban and
Environmental Policy Institute (UEPI) at Occidental College.
He added: ”The availability of Benlysta means that patients
with moderate to severe disease activity who are on steroids
and other immune system suppressants now have an alternative that is safe and effective and could limit the toxicity of their
current treatment—while at the same time improving the way
they feel, their quality of life, and decreasing their inflammation and drug requirements.”
Since Benlysta’s not for everyone, check with your doctor.
There’s more about the drug—whom it’s for, a Q & A, and
information on how LA doctors, trials, and participants were
instrumental in keeping the research moving forward—at
www.LupusLA.org.
Pictured (left to right): Lupus LA support group facilitator Bridget
Hood, outreach coordinator Charlette Ofrecio, Rep. Lucille RoybalAllard, and patient services director Elyse Reyes.
A model initiative started over a decade ago in New York City by
our national partner, the S.L.E. Lupus Foundation, the Lupus
Cooperative gives people with lupus and their families a place to
go, touch base with a bilingual (English-Spanish) staff person,
and get key information on living with lupus. Visitors will find:
• support groups in English and Spanish
• referrals to physicians, health & social services agencies
• assistance for everything from housing to education, and
advice in dealing with issues that come up at work and home
for people with a chronic illness.
.
Come celebrate all that you’ve helped us achieve and raise record funds to
jump-start more research and new programs to educate those with this
devastating disease. Be a part of this highlight of Lupus Awareness Month!
“We are thrilled to finally be launching this effective and handson program in the Los Angeles area,” said Adam Selkowitz,
Lupus LA’s chairman. “Our hope is to increase our reach even
beyond the Los Angeles metro area and open one or even two
additional cooperative locations by year’s end.”
Caring for Families
Come to Camp!
The Painted Turtle
Starts July 16th
Sign Up Now
Summer is for boating,
fishing, horseback riding,
arts and crafts, swimming,
archery, and so much
more. At The Painted
Turtle, kids 7 to 16 build
life skills and independence while taking part in
such fun activities. As a result, self-acceptance
and self-esteem flower. The Painted Turtle is
staffed with volunteer rheumatologists, rheumatology nurses and counselors who provide
all medical care to campers. Apply now for
one of the 20 spots that Lupus LA is offering
for this unique camp in Lake Hughes, located
just outside of LA. Contact Elyse Reyes at
[email protected] or 310-657-5667.
Coping Skills for Parents and Kids
Living with Lupus
New Workshop Meets the First Saturday of Every Other Month
The curriculum was developed for parents and kids with lupus to find ways to
cope and communicate. The workshops are free and began on April 2.
Where: Children’s Hospital Los Angeles, Ground Floor, Conference Room D.
Time: Arrive between 8:30 a.m. and 9 a.m. The meeting lasts from 9 a.m. to
11:30 a.m., but we can’t accept late-comers.
Interested? Come to one program or come to all. Program dates are June 4,
August 6, October 1, and December 3. Register at www.LupusLA.org/events
or call 310- 657-5667.
Team Life Without Lupus Takes on the LA Marathon and 5K! March 19 + 20, 2011
50 Lupus LA team members participated in the events
and raised over $50,000! Dr. Suhas Radhakrishna was one
of them. Here are his thoughts before the big race:
“
I am running the Lupus LA 5K to support the amazing kids
I’ve seen during my Pediatric Rheumatology Fellowship at
Children’s Hospital Los Angeles (CHLA) and the incredible
work of Lupus LA.
As one of their doctors, I
know the challenges kids
face in their struggles against
lupus. I’ve seen them in their
cramped hospital beds, barely
able to move with fatigue,
often with extensive rashes
and swelling in their joints.
Some have been even sicker:
hallucinating or comatose,
breathing through a ventilator,
or needing dialysis.
Most have seen several doctors
searching for a diagnosis. Finally after a battery of tests, they get the bewildering diagnosis of lupus, and are
told they must take medications for
months, often with unpleasant side
effects. This is to say nothing of the
mix of fear, depression, anger, and
isolation many experience during this
time whenever the disease “flares” or
threatens to return again.
Fortunately, I have the incredible privilege of seeing these kids
and their families make it through these tough times. It is
such a joy to see them in clinic and listen to their stories about
basketball tournaments, pottery classes, or plans for college.
I can’t wait to join them to celebrate their successes by lacing
up our sneakers and hitting the pavement! I am also running
to support Lupus LA, a phenomenal organization that provides
patient services, raises awareness and supports research.
With the generous support and hard
work of Lupus LA, we at CHLA have
been running a support and education discussion group for families
with lupus and other rheumatic diseases. This group helps families find
common ground in their fight against
lupus, from understanding the disease better to being able to explain it
to others, developing healthy coping
and reflection skills, building selfesteem, getting support in school
and planning for the future. It has,
without a doubt, changed lives.
”
Pictured (clockwise from top left): 5K’ers walk to the start
line with their orange Lupus LA bags; Dr. Radhakrishna
at Dodger Stadium ready to take on the LA 5K; Lupus LA
supporter Gina Goldsmith didn’t let the rain dampen her
spirits as she ran the marathon.
Toni Braxton:
“This is what lupus
looks like.”
We thank singer and luncheon honoree Toni Braxton for sharing her lupus story publicly for the first time at our Hollywood
Bag Ladies Luncheon last November, which raised an incredible
$300,000 for the fight against lupus—and did even more to raise
awareness for the cause! Celebrity stylist Rachel Zoe was our
other “Woman of Achievement” recipient, and Lady Gaga sent a
message: “Toni, your strength is admirable. As a woman whose
family has been affected by lupus, I understand your struggle
and have you in my thoughts.” More than 500 attended and bid on
hundreds of bags.
Special thanks to event sponsors
Fendi, The Bag Snob, and Domaine
Serene Winery (domaineserene.com).
Pictured (clockwise from top): Toni Braxton
accepts her award with her sisters by her
side; the Fendi fashion show was a hit; new Executive Council
member Shante Broadus; Jennifer Aniston was one of dozens of
celebs who donated bags; honoree Rachel Zoe checks out
the selection of “exotic” bags up for auction.
look who got
lucky for lupus!
Last September, Hollywood’s hottest took over the rooftop of the Petersen Automotive Museum to “Get Lucky for Lupus!” Guests enjoyed
an evening of mixing, mingling and poker playing while overlooking
the Hollywood Hills. Young Hollywood celebrities, athletes, musicians
& VIPs anted up to support Lupus LA by raising more than $60,000 to
fund research to prevent, treat and cure lupus. The cast of Dancing
with the Stars and many more showed up to have fun and support the
cause.
The Band From TV hosted high-stakes poker while American Idol’s
Blake Lewis DJ’d the event. The festivities also included an auction of
memorabilia from stars of sports, music, TV and film, and a customized
photo booth. Special gratitude to event sponsor Nicole Paxson.
Pictured (clockwise from top left): Bob Guiney, Scott Grimes, and James
Denton from The Band From TV; Howie Dorough from the Backstreet Boys
and his wife Leigh; some of the cast of Dancing with the Stars; Mercedes
Yvette from America’s Next Top Model.
8383 Wilshire Blvd., Suite 232
Beverly Hills, CA 90211
Phone: 310-657-LOOP [5667)
Fax: 310-860-9966
Email: [email protected]
www.LupusLA.org
Research News: Lupus LA’s National Partner Awards New Round of Novel
Research Grants to Drive Scientific Discovery in Lupus
Thanks in part to generous support
Lupus
Research from Lupus LA, the Lupus Research
Institute was able to award $3.6
Institute
million for 12 new wide-ranging and
innovative studies in lupus.
The highly competitive $300K grants span a range of topics
and multi-disciplinary approaches that mirror the complexity
of lupus.
The scientists will test their innovative and highly promising ideas about why lupus happens and what can be done to
prevent and stop it.
“The Lupus Research Institute’s documented discoveries are among the most pivotal in lupus, spanning
multiple organ systems and molecular aspects of the
disease.”
- Michel Nussenzweig, M.D., Ph.D.,
Sherman Fairchild Professor at Rockefeller University
Co-chair, LRI Novel Research Task Force
Grants are awarded after multiple rounds of highly-rigorous
peer review by scientists on the LRI Scientific Board. Find out
how successful the LRI has been in driving discovery in lupus
at www.LupusRearchInstitute.org.