Lessons Learned in Love - Lupus Foundation of Minnesota

M I N N E S O TA
fall 2010
Volume 34, Number 4
A PUBLICATION OF THE LUPUS FOUNDATION OF MINNESOTA FOR INDIVIDUALS WITH LUPUS, THEIR FAMILIES, THEIR FRIENDS AND THE MEDICAL COMMUNITY
Lupus News
Lessons Learned in Love
Team Ina participated in the
September 11 Lupus Walk for Hope
and 5K Trail Run in the Twin Cities
to honor a very special mother.
Ina Berkowitz passed away in
November 2009 of complications
from lupus. Benjamin Berkowitz,
her 30-year-old son, felt compelled
to honor her memory and help fight
the disease that killed her.
Benjamin felt it was important to
address his sadness and participate
in something to honor his mom,
because this June he had begun
planning his wedding to Janessa.
Benjamin wanted to be able to fully
appreciate that experience, as well
as his wedding day, which was set
for just a few weeks after the run.
Benjamin Berkowitz (center) formed a team to participate in the Lupus Walk for Hope and
5K Trail Run to honor his mother Ina Berkowitz, who passed away in November 2009.
He’s shown here with teammate Nicole Hendrickson (left) and his wife, Janessa Berkowitz.
Team Ina raised $2,500.
“This was a tough year for us,” said
Benjamin. “To go through a death the
same year we’re planning a wedding
is hard. I wanted to do something to say goodbye. Because the race was so close to
the wedding date, it meant so much to us to honor her since she wouldn’t be there
and it was a nice way to have good memories of her.”
With no family members in Minnesota, Benjamin turned to his fiancé, Janessa, and
close friend, Nicole Hendrickson, as his core support and to form a team to run.
They set a goal to raise $1,948 — in honor of the year Ina was born.
Giving back and fundraising around the cause felt natural for Benjamin.
“My mother was very involved in fundraising for a lot of organizations in New
Jersey and New York,” said Benjamin. “I come from a family and social network
that’s really involved in fundraising.”
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Benjamin had first connected with the Lupus Foundation of Minnesota (LFM) a few
years ago when he decided to volunteer. He was enlisted to use his paramedic
skills and assist at LFM events. Earlier this year, he noted the Lupus Walk for Hope
and 5K Trail Run on the organization’s website and made the decision to get
involved. He set up a donation website (through LFM) and wrote a heartfelt email
about his desire to honor his mother. He then distributed it to over 50 people,
many of whom were his mother’s friends.
“My mother had a lot of really wonderful friends,” said Benjamin. “All it took was
an email because all these people are so amazing.”
Continued on page 2…
Features:
PAID
From the Desk of the President . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 3
Minneapolis, MN
12th Annual Golf Classic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 3
Permit No. 1019
13th Annual Lupus Walk for Hope and 5K Trail Run . . . . . . . . . . . . . . . page 4
Survey Results Guide Future Programming . . . . . . . . . . . . . . . . . . . . . . . page 5
Laughs for Lupus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 5
2010 Lupus Summer Fellowship Program . . . . . . . . . . . . . . . . . . . . . . . . page 6
LFM Receives Certificate of Appreciation for Recycling Efforts . . . . . . . . page 6
Make a Difference: Spotlight on the Young Adult Support Group . . . . . . page 6
Insurance Options for Pre-Existing Conditions . . . . . . . . . . . . . . . . . . . . page 7
Upcoming LFM Education Opportunities. . . . . . . . . . . . . . . . . . . . . . . . . page 7
Support Groups/Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 8
Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 9-12
Schedule Pickup Service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 12
LFM Board of Directors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . page 12
featured story
Continued from page 1…
Within a few weeks, Team Ina had surpassed its original
goal and raised $2,500 from 27 people. One couple who
knew and loved Ina contributed $1,000.
On the day of the run in Plymouth, Benjamin said his team
was emotional. “As we got to the race, the Streeters sang
‘Wherever You Float’ and we all started crying,” he said.
“Everyone there was thinking about something very
personal and about all of our own struggles with lupus.”
With all their fundraising efforts and completion of the run,
Team Ina was able to close a chapter of their young lives
that had been weighed down by grief. Ina would be
so proud.
Ina Berkowitz was no complainer. She was generous, feisty
and hard-working, and it wasn’t until Benjamin was about
15 that he started noticing how ill his mother was. He
witnessed the lupus attacks and watched her paralyzed with
pain. He doesn’t know when she was diagnosed.
“Physically, I could do very little for her,” he said. “I could
bring her food, do the little things around the house that she
was unable to do. I learned at a very young age what it felt
like to be powerless. I always wanted to do something for
her because it’s in my nature. It’s what made me a
paramedic.”
Ina may have been sick a lot, but she was the kind of
woman that wouldn’t allow her children (Benjamin has a
sister who is seven and a half years older) to stay home
from school unless they had a very high fever. She set the
example and went to work despite her pain and health
struggles. She did the best she could.
As she battled lupus, over the years she worked for several
organizations like the United Jewish Appeal, a university
with campuses in New York and Israel, and the gift shop at
the Jewish Museum on the Upper East Side of Manhattan.
“When you’re living
with someone who’s
sick or struggling,
at the end of the day
they’re your family
and you make
a conscious effort
to be as nice,
understanding
and accommodating
as possible.”
— Benjamin Berkowitz
pictured above with his
beloved mother Ina Berkowitz
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Lupus News
fall 2010
What’s remarkable about Ina is that, despite her own
financial and health struggles, she baked banana bread and
brownies for the homeless people in her neighborhood.
She knew them all by name and they knew her and her dog.
“It’s a reflection of your job as a parent that they want to
help. You can say, ‘Hey, I raised a darn good kid.’”
Ina had a job right up until a few months before her death.
She left it to take care of her mother who died just 29 days
before Ina did.
“Nothing stopped her and that’s the legacy I want to pass
along to people,” Benjamin said. “You’re either going to
wake up tomorrow and have breakfast or you’re not going
to wake up, so just get up and do your best.”
Now that Team Ina’s work is done, Benjamin and Janessa
have kept going and are doing their best as well. They were
married on October 6 in Israel.
“I lived in Israel for a year and it was a very special place
for me in my life,” said Benjamin. “We opted to go some
place meaningful and intimate.”
Janessa and Benjamin were students at Augsburg at the
same time, but they didn’t date there. It wasn’t until several
years later that they connected.
“I responded to a restaurant on the ambulance because
someone was sick,” said Benjamin. “While I was setting up
some equipment, Janessa passed by me in the hallway and
we kind of had a moment and I remember thinking, ‘how
am I going to get her phone number?’”
Turns out, Janessa was one step ahead; she wrote it down
and stuck it in the window of the ambulance. “We had a
date a couple days later and the rest is history,” he said.
Now Benjamin — having lived with someone with a lifethreatening illness — is bringing all the good things he
learned about family to his marriage.
“I think it’s important to be good to one another and nice to
one another,” he said. “When you’re living with someone
who’s sick or struggling, at the end of the day they’re your
family and you make a conscious effort to be as nice,
understanding and accommodating as possible. They’re
your family and that’s all you have.”
“My mother didn’t know a stranger,” said Benjamin with pride.
As the lupus progressed, Ina was diagnosed with two other
autoimmune diseases, Crohn’s disease and myasthenia
gravis. It became harder to work steadily; she lost one job
because her employer could not cope with the times Ina
would have to be absent from work — when the pain got
bad enough. Benjamin and his sister wanted to help, and
they worried, but Ina resisted it.
“She wanted her children to be as carefree and happy as
possible,” he said. “We spent a lot of effort trying to get her
to let us help her.” During the process, Benjamin began to
understand how difficult it can be for a parent to let their
children be caretakers.
“My personal biased opinion is that it’s very important for
families to be families and a given person’s needs exceed
the role that they’re assigned,” Benjamin observed. “I really
think it’s crucial and every member needs to feel like they
can express the love they have for each other and the need
to physically do things to make others feel better.”
Benjamin’s inability to care for her to the degree that he
wanted left him with a lot of sadness. As a result, he has
advice for parents who have lupus and are struggling with
accepting help from their children — think of it as
validation for how you raised them.
LUPUS FOUNDATION
OF MINNESOTA STAFF
Jennifer Monroe
President
[email protected]
Cheryl Como
Vice President of Client Services
[email protected]
Karin Gelschus
Communications Coordinator
[email protected]
Sara Otto
Vice President of Development
[email protected]
Gustavo Taberna
Community Outreach Coordinator
[email protected]
fundraising
From the Desk of the President
By Jennifer Monroe, President
Make new friends
and keep the old,
one is silver, the other gold
This maxim comes to mind as I reflect on the activities the Foundation has
undertaken this past year, and the significant growth we have seen in event and
program participation.
We cherish the efforts of those we have come to know and who have faithfully led
or supported activities to increase awareness of lupus including funding research
efforts toward better detection, treatment and a cure. We are also grateful for the
opportunity to be able to connect with others for the very first time, for that
reflects real progress in our mission to increase public awareness and advocacy
efforts for those affected by the disease.
We are a small organization with a small core staff (three full-time and two parttime individuals). Annually less than nine percent of our total revenue is spent on
administration. It is the effort of numerous friends and volunteers that enable us to
accomplish the sheer volume that we do. From volunteer board members who
devote many, many hours a month to provide governance to the organization,
and volunteers who en mass manage almost every aspect of the Walk for Hope
and 5K Trail Run events, to researchers at the University of Minnesota who
provide their time in-kind to personally mentor and instruct lupus summer
research fellows.
This year, for the first time, we have been able to provide professional education
credits for health and social work professionals participating in our seminars and
webinars. We also added a new partnership with Children’s Hospital, expanding
our efforts to support families with children and adolescents impacted by lupus.
And finally, our 2010 Walk/5K events drew 1,226 new participants and donors!
We do still have a lot of work to do. But we are grateful for what we have
accomplished so far together. I was never quite sure in the maxim which ones
were the silver and which were the gold, but it hardly matters because it is clear
that we are blessed and are truly rich in friends.
Thank you everyone (every-friend) who has helped to make all of the above
possible in 2010.
LFM’s 12th Annual Golf Classic Fundraiser
On Wednesday, July 7, with threatening weather
surrounding, but not touching StoneRidge Golf Club,
Lupus Golf Classic supporters enjoyed 18 holes of golf
to help raise money for lupus research. At 10 a.m.,
registration began and golfers grabbed a lunch on their
way to the driving range for some one-on-one
instruction with golf professional Kevin Lucken from
Interlachen Golf Club.
Ready to hit the links, all foursomes teed off at noon
with a shotgun start. Golfers encountered a course full
of closest to the pin contests and other proximity games
including a hole-in-one for a two-year lease on a car
and a poker hole hosted by KFAN’s Cory Cove.
The Lupus Foundation of Minnesota’s Student Summer
Fellows were on hand for the day’s festivities, assisting
with registration, course games, and the night-end
program and auction, which generated funds to directly
support 2011 Student Summer Fellowships through LFM.
Dale Berry, LFM Board Member, emceed the dinner
program which was highlighted by keynote speaker
University of Minnesota Athletics Director Joel Maturi.
Mr. Maturi spoke on his history in athletics as well as
the importance of teamwork in university athletics and
in the search for a cure for lupus.
The event’s success was indeed a team effort. GLS
Companies generously repeated as our title sponsor.
Knowledge Marketing and Fortress Financial Group
were also headline supporters with their cart and lunch
sponsorships respectively. Thanks to all golfers,
sponsors, volunteers and contributors who helped us
raise over $35,000!
The Barry Foundation team of Pam Borgerding, Nate
DeMars, Dean Hoffrogge and Mark Knutson came out
on top on the scoreboard, but only after a scorecard
tiebreaker. Winding up in second place was the Valu
Thrift Store team of David Kloever, Mike McGrath,
Robert Boedigheimer and Tom Jacobson. Two strokes
behind in third place was the Fortress Financial team
of Dan Langworthy, Rick Cardiff, Frank Taylor and
Taybin Tushaus.
The Anchor Bank team hoping the putt falls.
Some highly skilled golfers took home prizes for their
feats: Closest to the Pin on 7 went to Neil Peterson;
on 9 was Troy Hansen; on 14 was Pam Borgerding; and
Rick Dahlin on hole 16.
Men’s Long Drive was awarded to Mike Wolle and
Women’s Long Drive to Kathy Wetzel. John Jendro and
Lynn Clarey had the Longest Putts on holes 8 and 15
respectively. On holes 5 and 12, Chris Wiechman and
Rick Dahlin were Closest to the Pin in Two.
Mark your calendars for next year’s Lupus
Golf Classic slated for Wednesday, July 20.
The Sterling State Bank team with LFM Summer Fellows Laura Zwilling (left)
and Amanda Louiselle (right) and KFAN’s Cory Cove (second from left).
University of Minnesota Athletic Director
Joel Maturi speaks at dinner.
Tournament Champions: The Barry Foundation team.
GLS Companies team members watch Mike Kucera
attempt a shot.
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fundraising
13TH ANNUAL
About 100 miles and one week was all that separated the Lupus
Walks for Hope and 5K Trail Runs held on Saturdays, September
11 at French Regional Park in Plymouth and September 18 at
Essex Park in Rochester. Both events brought out hundreds of
people who either walked or ran for hope, topping the record
attendance of last year. Whether you walked yourself, collected
donations, made an online donation, donated an auction item,
sponsored a walker or volunteered, you helped to raise hope …
hope that one day there will be a cure!
Almost $70,000 was collected to support Lupus Foundation of
Minnesota grant-making and direct services.
Our sincerest gratitude to Chaska Eye Care, our Hope Sponsor,
as well as sponsors LOVE 105 and Chili’s. Special thanks to
Cory Cove and Betsy Singer for emceeing the programs;
Dr. Dan Mueller and Dr. Vai Chowdhary for sharing lupus
research updates; the Streeter Family as Lupus Ambassadors;
and to all staff and volunteers who made the event a huge success!
We look forward to seeing you again (or maybe for the first time) at next year’s events —
mark your 2011 calendar for September 10 in the Twin Cities and September 17 in Rochester.
Thank you again for your many contributions, which provide hope and help those whose lives
are touched by lupus in Minnesota right here, right now.
Additional photos are posted in our Photo Gallery at www.lupusmn.org and on Facebook.
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Lupus News
fall 2010
news briefs
Survey Results Guide Future Lupus Foundation Programming
By Brenda Frie MA, OTR/L, CHT
Over a year ago, I began working collaboratively with the Lupus Foundation of
Minnesota (LFM) staff on the development and implementation of a needs assessment
survey as part of the Masters in the Occupational Science Occupational Therapy
program at St. Catherine University.
TABLE 1: DOING EVERYDAY ACTIVITIES
My personal interest in the area of inflammatory disease stemmed from 25 years of
clinical practice as an occupational therapist specializing in hand rehabilitation.
As an occupational therapist I worked in a clinical setting to adapt or modify the task
or environment to enhance performance in areas of daily living such as driving,
parenting, care giving, and work.
The purpose of the needs assessment survey was three fold; 1) to assess the everyday
living challenges of those who are served by the Lupus Foundation of Minnesota;
2) to determine LFM member’s current access to LFM and health care services; and
3) to assess participants interest in attending future self-management program that
would address identified areas of life challenge.
Ninety-six adult participants from the Twin Cities metro area completed the survey.
The participants surveyed ranged in age from 19 to 87, with an average age of
49 years old. Ninety-five percent of the respondents were women. Of those surveyed,
83 percent reported they were diagnosed with SLE, the remaining participants had
associated conditions such as cutaneous discoid lupus, connective tissue disorder,
and arthritis.
TABLE 2: MANAGING YOUR PHYSICAL SYMPTOMS
The survey identified the needs that LFM members face doing daily activities,
managing physical symptoms and coping with emotional concerns. The everyday
living tasks that were identified as a high to moderate challenge by greater than 30
percent of respondents were: climbing, participating in sports, performing outdoor
tasks, getting things done, lifting, gripping, walking, shopping, rising in the morning
and doing household tasks. See Table 1.
The physical symptoms identified as a high to moderate challenge by greater than 30
percent of respondents were managing fatigue, joint pain, physical exhaustion, skin
sensitivity, memory problems, concentrating, reduced circulation, body pain, muscle
weakness, loss of upper and lower extremity motion, mental exhaustion and loss of
concentration. See Table 2.
Emotional concerns (Table 3) identified as a high to moderate challenge by greater
than 30 percent of respondents were: coping with depression, stress, anxiety,
emotional support, coping with sexual relationships and finding someone who
understands.
TABLE 3: COPING WITH EMOTIONAL CONCERNS
Overall participants reported a high level of access to LFM services. Medical
professionals and LFM services were the top two health information resources utilized
by participants. Eighty-seven percent of participants reported that they may be
interested in attending a community-based self-management program offered through
LFM. Fifty percent of those surveyed indicated specific interest in attending programs
focused on the management of the symptoms of strength and conditioning, fatigue,
pain, stress or coping skills and life balance.
LFM is working to design and implement future self-management educational
programming, based on the identified needs, to direct future program design,
development and implementation.
Laughs for Lupus: A Comedic Success
Lupus is not something to laugh about. But what about generating a few
laughs to benefit lupus research and direct support to those with the disease?
Kelly McNallan did just that as she spearheaded the first Laughs for Lupus
event in Rochester on September 14 to raise funds and awareness for the
Lupus Foundation of Minnesota.
Kelly is a Senior Research Technologist and Supervisor, working under
Dr. Ann Reed, a recent recipient of an LFM research grant, in the Mayo
Clinic Rheumatology division.
Kelly herself is a budding stand-up comedian (known on stage as Shannon Kelly)
and hosted the show, eliciting some good chuckles from the 80 or so attendees at
Goonies Comedy Club.
The show featured comedians John Bush, who has opened for Howie Mandel
and appeared on Late Night with Conan O’Brien and HBO Comedy Showcase,
and Michael Callahan who has performed both comedy and magic all across
the country.
The event lead to a $1,100 donation to the Lupus Foundation of Minnesota.
Kelly is already talking of hosting the second annual Laughs for Lupus in 2011.
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news briefs
2010 Lupus Summer Fellowship Program
This year was the 29th year in which the Lupus
Foundation of Minnesota has provided college
students with the unique opportunity to partner with
accomplished researchers at the University of
Minnesota. Since the programs inception, a total of
$379,134 has been awarded to support 99 fellows
working on vital research efforts aimed at improved
detection, treatment and a cure.
Summer Fellowship Experience Expectations
After a competitive application process, each fellow
is paired with an experienced faculty member who
specializes in autoimmunity research. The faculty
member directs the fellow’s work in their laboratory
for the summer. Laboratory duties address project
proposals and aspects of research questions posed.
Tasks vary depending on each specific project, but
they may include the following; implementing a
wide array of experimental techniques
(multiparameter flow cytometry, as well as immunoprecipitation, western blotting, ELISA, and PCR);
processing biological samples from patients,
isolating DNA/RNA from human blood, synthesis of
cDNA and cRNA probes for microarray analysis
and, assisting with the production and purification
of biological agents for use in experiments
(antibodies, recombinant proteins). Fellows work
closely with faculty supervisors to plan and execute
experiments and perform literature searches and
corresponding research as suggested by the
principal investigator; and other duties as assigned.
Research Seminar and Outcomes
In mid-August, the fellows provide a brief public
presentation of their research to autoimmunity
program lab staff, staff and board members of the
Lupus Foundation of Minnesota, friends and family
along with the general public. The final aspect of
the fellowship is to complete a written final report
which addresses the initial project proposal and
research question posed.
Reports provide the background of the issue
explored and articulate the specific scientific
questions, and the steps taken, to answer the
research questions posed. Following is a summary
of the research questions identified by each student.
(Full 2010 fellow reports can be found on the LFM
website under “research.”)
2010 Fellowship Program Participants
Philip Titcombe, a junior from Macalester College,
worked in the lab of Dr. Daniel Mueller. Mr.
Titcombe’s research explored autoreactive B cell
detection technology including constructing
tetramers of cyclic citrullinated peptides. Detection
of citrulline-specific B cells using these tetramers
could help characterize the potential for
autoimmune disease and illuminate the mechanism
of its development.
Amanda Louiselle, a junior from the University of
St. Thomas, worked in the lab of Dr. Emily
Gillespie. Ms. Louiselle investigated the mechanism
of Hydroxychloroquine, a commonly prescribed
systemic lupus erythematosus medication (brand
name Planquenil). Hydroxychloroquine has been
shown to be effective in reducing clinical symptoms
in many lupus patients, however the specific
mechanism of the drug within certain immune cells
is still unknown.
Laura Zwilling, a junior from Bethel University,
worked in the lab of Dr. Mehrnaz Hojjati. Ms.
Zwilling performed data analysis on the incidence
of lupus nephritis and its prognostic factors in
African American and Caucasian SLE patients.
She reviewed and analyzed clinical and lab data
on 679 patients from the Autoimmune Biomarkers
Collaborative Network cohort, which was created
in collaboration with the John Hopkins Lupus Center.
LFM Receives Certificate
of Appreciation from
Anoka County Board
of Commissioners for
Recycling Efforts
In May, the Lupus Foundation of
Minnesota received recognition
from the Solid Waste Abatement
Advisory Team at Anoka County’s
Integrated Waste Management Department, along
with a certificate of appreciation from the Anoka
Board of Commissioners, for “continued effort(s)
to provide recycling services that help ensure
resources for future generations.”
The county recognized the Foundation’s reuse
and recycling efforts through the operation of the
LFM Pick Up Service, which provides curb-side
collection and distribution of individual
donations of unwanted clothing, appliances and
small household goods throughout the Twin
Cities. Over 24 million pounds of donated goods
have been collected in the last three years (2007,
2008 and 2009).
LFM receives revenue based on the volume of
goods collected, which in turn provides critical
resources for core operations and client service
functions at the Foundation. Items collected that
are in good repair end up at thrift stores located
throughout the metropolitan area for resale.
Dane Schaleben-Boateng, a junior from the
University of Minnesota, worked in the lab of
Dr. Erik Peterson. Mr. Schaleben-Boateng’s project
focused on the PTPn22 620W (Protein tyrosine
phosphatase, non-receptor type 22) which has been
found to be more prevalent in patients with
systemic lupus erythematosus, as well as patients
with several other autoimmune diseases. This gene
encodes a protein tyrosine phosphatase which is
expressed primarily in lymphoid tissues. This
enzyme associates with the molecular adapter
protein CBL and may be involved in regulating CBL
function in the T cell receptor signaling pathway.
Door-to-door pickup service provides multiple
benefits. The ease and convenience for those
individuals looking to dispose of items directly
from their curb is significant. Pick-up routes are
planned for efficiency and eliminate the need for
individuals to spend time and resources to
transport smaller quantities of items. Donor
contributions of clothing and small appliances
help to make affordable items available to the
general public, as well as create jobs for pickup
and distribution staff, and reduce over-all waste
by keeping unwanted items out of dumps
and landfills.
The deadline to apply for a fellowship in the
summer of 2011 is early May. Watch the LFM
website for the application.
For more information on the pick up service,
call 651-748-0400. To schedule a pickup online,
go to www.lupuspickup.org.
An Opportunity to Make a Difference and Connect
Spotlight on the Young Adult Support Group By Amie Claire McArdell
In January 2005, I was extremely
tired and had unexplained pain
and swelling in my legs. I
brushed the fatigue off to being a college student, but
then I started having trouble in my classes, lacking
focus due to pain and no energy.
I was fortunate to connect with LFM after I moved back
to Minnesota due to lupus complications. I had been
living independently in Michigan for three years but
was becoming very ill and my rheumatologist urged me
to move home to be with family and for a better quality
of life.
After dozens of doctor appointments with multiple
doctors, I was diagnosed July 5, 2005. Although the
process was long and frustrating, I was relieved to
know the reason behind my symptoms.
Without health insurance at the time, I was not able to
afford my medications. Support from LFM provided me
the resources to get those medications and get
connected with a rheumatologist here in the Twin
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Lupus News
fall 2010
Cities. Thankful for that help, I wanted to give back and
looked for more ways to help others.
My experience of diagnosis and trying to finish college
was incredibly challenging. Although I had support
from wonderful friends, they couldn’t fully understand
what I was going through and I didn’t know any other
lupus patients to whom I could turn for support. I felt
very alone during that time.
Continued on page 7…
news briefs
Insurance Options for Pre-Existing Conditions
A webinar discussion of the Federal Patient Protection and Affordable Care Act
In a September 22 webinar hosted by the Lupus Foundation of Minnesota, Tina
Armstrong, Director of Consumer Education and Outreach for the Minnesota
Department of Commerce discussed with participants the Federal Patient Protection
and Affordable Care Act (PPACA) statute signed into law in March 2010. The law
includes numerous health-related provisions that will take effect over a four-year
period. Ms. Armstrong provided the most up-to-date information on the Affordable
Care Act Pre-Existing Conditions Insurance Plan (PCIP) and what it means to those
who have either been denied or lost coverage due to a medical condition, such as
lupus. Below are highlights that participants found useful in their understanding of
this complex subject.
On July 1, eligible residents of Minnesota were able to apply for the Federal PCIP
temporary high risk pool. High risk pools are designed to cover people who are
unable to get health insurance in the private market due to a health condition.
Eligibility requirements for PCIP include being a citizen of the United States, having
had no creditable coverage for the previous six months, a diagnosis of a pre-existing
condition and the ability to provide proof of insurance denial. The temporary high
risk pool plan covers a range of health benefits, including primary and specialty care,
hospital care, and prescription drugs.
Reforms under the Affordable Care Act are geared toward ending denial of insurance
coverage to adults and children with pre-existing conditions. September 23 ushered
in the start of the enrollment period for PICP and the first round of provisions. These
reforms will apply to all new health plans as well as many existing health plans as
they are renewed.
Known as the 9/23 Provisions, these provide patients rights such as:
• Lifetime Maximum Prohibition: there can be no lifetime maximum dollar
value placed on health benefits
• Plans cannot deny coverage to children under 19 years of age with a
pre-existing condition
• Parents can continue coverage of children up to age 26
for insurance. The Departments of Commerce, Health and Human Services will
work with health plans to identify the products that will be sold through these
exchanges. Consumers will have the ability to comparison shop and purchase at
a single web site.
The 2014 Provisions include:
• Guaranteed Availability: Plans must accept every employee and individual that
applies, however plan administrators have the ability to restrict open
enrollment or implement a special enrollment period.
• Guaranteed Renewability: Pre-existing condition exclusions are prohibited for
all adults.
• Prohibits any waiting periods that exceed 90 days for group health plans and
group health insurance coverage.
• Plans may not deny an individual participation in an approved clinical trial for
cancer or a life-threatening disease or condition.
• Plans may not deny or limit coverage of routine patient costs for items and
services provided in connection with the trial.
Ms. Armstrong also discussed how in 1976, Minnesota, along with a handful of other
states, became a leader in health insurance coverage for those who have been denied
because of a pre-existing condition. Minnesota implemented the Minnesota
Comprehensive Health Association (MCHA) which is referred to as a state high risk
pool. MCHA is considered a health insurance of last resort and currently has active
enrollment of about 30,000 Minnesota residents.
Before making application to a health plan, Ms. Armstrong encouraged everyone to
learn more about the costs and benefits of both the state and the federal options.
To listen to this webinar in its entirety, go to our website at www.lupusmn.org and
click on the “Resources” tab.
For more detailed information, you can go to these websites:
Federal Pre-Existing Insurance Plan: www.healthcare.gov
In 2014, the temporary PCIP high risk pool will end and “exchanges” will open.
As Ms. Armstrong explained, exchanges are an organized, competitive marketplace
Upcoming
LFM Education
Opportunities
All are FREE, but require
pre-registration.
Minnesota Comprehensive Health Association: www.mchamn.com
WEBINAR:
WORKSHOP:
HEALTH PROMOTION FOR ADULTS
WITH CHRONIC DISEASE
Wednesday, November 17
11:00 AM – 12:30 PM
CHRONIC CONDITIONS AND BARRIERS TO BETTER
HEALTH FOR THOSE WITH LIMITED ENGLISH SKILLS
Friday, January 10, 2011
Pam York, PhD, MPH, RD, will discuss self
management tools, nutrition and techniques
for a healthy attitude to reduce disability
and enhance life.
Register by emailing [email protected]
Continued from page 6…
I saw there were opportunities via LFM to be trained as a
support group leader. Trainings happen twice annually
and address group processes, develop the foundation
skills for facilitating, and offer certification as a leader.
Becoming a leader for this group meant that I could help
connect with others so they would have connections
that I didn’t.
I hope that group members can make friends and
establish support systems that will help with the tough
times. The group is about being together, having a good
time, while being educated on relevant lupus and young
adult issues. Young adult members might find hope in
their experience with lupus and realize that there are so
many things they can do to help manage the disease to
lead a fulfilling life.
The first couple of years after diagnosis I felt very limited
because of the disease. I enrolled in nursing school, but
had to withdraw after a severe flare. Now, years later, I
have realized that I can still do what I want to do with
my life, but I may just have to go about it differently.
I love working in the health care industry, specifically in
hospice, and plan to start graduate school this spring. I
don’t feel as limited now because I realize I can still do
amazing things with my life. Lupus has been a gift in
that way because I really enjoy life and appreciate
opportunities that come my way.
Lupus is a challenge, but consider it something that
makes you special and unique, not something negative
that sets you apart from others in a bad way. From
experience, I know it can be hard to be young and have
Presented by Jose Gonzalez, Director, Office of
Minority and Multi-Cultural Health. Minnesota
Department of Health.
Register by emailing [email protected]
For more information on LFM’s Educational
Programming, contact Client Services at 952-746-5151.
lupus. I couldn’t always do what I wanted with my
friends and didn’t always take care of myself either.
But now I realize how to listen to my body and I’m
doing much better than when I was first diagnosed.
Finally, I want young adults to know that there are
others out there going through this too. You aren’t alone.
There are so many people around that can help you get
through this.
Young Adult Get Together: For ages 17-23
Last Thursday of the Month
5:00 – 7:00 PM
The EDGE Coffee House
2399 University Avenue West, St. Paul, MN 55114
Contact Amie at [email protected] or
612-282-7621
7
support groups
Community Support Groups
Support groups have been shown to have a positive effect on the wellness of a lupus patient. It is a
way to share personal stories, be introduced to educational materials and resources, and socialize
with others who understand the challenges of living with lupus. The following is a list of groups that
are being conducted.
This symbol
denotes groups that are conducted by a certified LFM Support Group Leader
and occur in consultation and in collaboration with the Lupus Foundation of Minnesota.
Monthly Client Luncheons
Second Wednesday of Each Month
November 12, December 8 and January 12
11:30 AM – 1:30 PM
Lupus Dinner Discussions
Fourth Wednesday of Each Month
October 27, (off for the holidays,) and January 26
5:30 – 7:30 PM
Lupus Foundation of Minnesota Office
The Atrium, 2626 E 82nd St., Bloomington, MN 55425
The purpose of the luncheons and dinners is to connect clients
and supporters in a relaxed setting with discussion centering on
lupus-related topics. This is an open-ended service. For more
information or to RSVP, contact a member of Client Services at
952-746-5151 or 800-645-1131.
Telephone Support
Telephone Support Volunteers have a personal interest in
and/or experience with lupus and are available for those
times you need to talk.
Please take note it is important that you consult a medical professional
for any concerns regarding symptoms, medication or care.
Support services are neither staffed nor supervised by medical professionals.
8
Lupus News
fall 2010
contributors
Thank You to Our Contributors
Contributors:
3G Electric, INC
Pamela Abraham
David and Carol Abrahamson
Margo Abramson
Dan and Jennifer Adamek
Carl Dean Ahlstrom
Brad Ahrens
Tim J. Alexson
Janet Allen
Karen Lynn Allen
Steven and Cynthia Althouse
Jon Amundson
Sandra Amyotte
Alice Anderson
Allen and Lois Anderson
Becky Anderson
Britt Anderson
Bruce and Missy Anderson
Cheryl Anderson
Diane Anderson
Lindy Anderson
Louise Anderson
Mary Ann Anderson
Paul and Brenda Anderson
Ron and Julie Anderson
Susan Anderson
Thomas W. Anderson
Tracy R. Anderson
Cindra Lee Andolshek
Libby Andras
Heidi Andrist
Katie Andrus
Grett Anema
Heidi Annexstad
Apogee Retail Call Center
Melanie Rose Appelquist
Gladys Applequist
Denise Armbruster
Greg Armbruster
Gary and Julie Arnold
Mark Arrington
Darrell and Donna Ashby
Frank Aspen
Nicole Atchison
Debra Avery
Conni Axness
Amy Bachmeier
Kimberly Bacon
Andrea Bagan
Janessa Baier
Betsy Baker
David and Michelle Baker
Jason Baker
Mary Jo Baker
Ashley Balsam
Frederick Banta
Brenda Sue Barber
Marnie Barnhart
Anne Baron
Diane Barstow
Kate Bartel
Ryan Bartlett
Kenneth Bartz
Rodney and Joyce Basham
Rick and Susanne Bateson
Hailey Bauer
Kevin and Joyce Bauer
Carole Lee Baxter
Thomas and Beth Beberg
Sarah Becher
Becker Furniture World Institute of
Research and Education
Erica Beebe
Gretchen F. Beecroft
Jill Beim
Michele Belisle
Allen and Patricia Bell
Amy Bell
Barbara Beltand
Avis Benson
Michelle Berdan
Arnold E. Berg
Denise Berg
Emily Berg
Helen Berg
Sarah B. Berg
Gregory and Robin Berger
Lynn Berger
Jana Lee Berghoff
Paul and Amy Berglin
Kathleen and John Bergman
Rebecca Bergner
Cynthia Bergquist
Benjamin Berkowitz
Elizabeth Berquist
Dale and Jean Berry
Kristen Bertling
Kristi Hoover Beshire
Best Buy Co., Inc
Mike Bialick
Ronald and Donna Bickford
Chuck Bies
Michele Renee Bilges
Melissa Biller
Tyler, Tate and Tony Billman
Mary Lynn Bittner
Alyson Bjornstad
Mark Bjornstad
Stan and Linda Bjornstad
Leslie LuAnn Blackowiak
Twila Blackowiak
Jill Blazevic
John Bledsoe
Leslie Bleichner
Janet K. Blomberg
Wendi Bloomquist
Gail Blosberg
Mary Ann Bodine
Robert D. Boedigheimer
Ken Boehmer
Erin Boese
Kristi Boese
Dina Boie
Dave Bolgren
Katherine and Greg Bolton
Nancy Lynn Bondhus
Dana Book
David and Bonnie Books
Jeffrey Bores
Kevin Borstelmann
William and Ellen Bourgeault
Gisele Bouroncle
Rex Boutelle
Erin Boyle
Christina and Matthew Braaten
David Selmer Braaten
Colleen Brandel
Laura Braun
Buck and Krista Breckle
Patti Brehm
Jennifer Britton
Susan Brooksbank
Randy Brose
Scott Brown
Toby Ray Brown
Betty Brumm
Jenelle Brumm
Maurice D. Bryan, Jr.
Charles Bublitz
Jesse Buchanan
Maria Buchholz
Walter and Susan Buchl
Vernon and Connie Buckmeier
Christopher Bucko
Jill Buelow
Walter and Harriet Buelow
Kay Buhrt
Anne B. Burau
Kelli Burau
Christopher Burch
Becca Burgess
Laurel Graham Burke
Verna Burns
Marlon and Angela Bushard
Lonnie Butler
Timothy Buttke
Maureen Buttrick
Pat and Debbie Cahill
Michael Cahn
Sandra Caldwell
Debra Campbell
Jensina Campbell
Jordan Campbell
Mary L. Campbell
LuAnn Canepa
Rick Cardiff
Nancy Ann Carl
Laurie E. Carlos
Donald and Violet Carlson
John Carlson
John and Jody Carlson
Larry Carlson
Samantha Carlson
Karen Carney
Pete Carpenter
C. Shea Carr
Jim and Nancy Carrier
Clara Carter
Charles Cartony
Janet Casey
Laura Casey
Megan Casey
Joe Castillon
Deb Castle
Betty Cavouras
Mary Cavouras
Traci Lynn Ceglar
Patricia Ann Champ
Doris Chapman
Noukane Chareundy
Cheryl Chatman
Mark Chevy Chevalier
Desiree R. Cho
Richard and Norma Chounard
Loralie Christensen
LuRae S. Christensen
Tiffany Christensen
Andrew Christenson
Lisa A. Christenson
Thomas and Susan Christian
Janelle Christie
Ilga Liga Cimbulis
Carrie Cisek
Megan Clapp
Dennis Clark
James Clark
John Clarke
Jane Clausen
Steve Clements
Deneen Clemons
Russell and Dawn Clevenger
Heather Colicchio
Cheryl Como
Trudi Connors
Jeff Conrad
Anthony J. Cook
Michael and Betty Coolbroth
JUNE 1 – SEPTEMBER 31, 2010
Jerret Coon
Walter E. Cooney, JD, MA
Jennifer Coughlon
Duane Crandall
Amy Crist
Catherine Crist
Aleisha D. Crouch
Michelle Cuka
Mary Cummings
Mitzi Curtis
Lavonne Curtiss
Lora Dahle
Amy Dahlquist
Roger Dahlquist
Josie Daly
Cheryl Dame
Barbara Damlo
Thomas and Debra Danczyk
Audrey Darling
Craig Davidson
Beverly Lavon Davis
Carrie Ann Davis
John M. Davis III and Dawn Davis
Rachel Davis
Luis E. Fong De Los Santos
Cresta Deeds
Daniel and Carmen Dehamer
Jennifer Dehn
Kevin G. DeJaeger
Nan Delwiche
Bill and Darlene Demars
Connie Demulling
Patrice Yvonne Den Hartog
Bonnie R. Dennig
Bobby Ryan Dennis
Jessica Kay Dennis
Janice Dereschuk
Eric DeRock
Debra A. Derr
Chantal Devane
Eric Edward Di Loreto
Heidi Dieter
Tami Dodge
Darryll Dodson
Lee Doering
Johanna Dorn
Christine Dosch
Judith Douglas
Aimee Downes
Thomas Downs
Roger Kent Dramstad
Marie Dranttel
Ernest and Jane Dreese
Duane Matzek, Inc.
David J. Duddleston
Lori Dudinyak
Amy Nicole DuFrene
Mark Vanburen Dugan and Joy Maria Zimmerman
Melanie Lynn Duncan
Mike Duncan
Teresa Duncan
Nikki Dvorsak
Marlene L. Earll
Robert and Victoria Eastlee
Sandy Eaton
Melissa J. Eckhoff
Patricia Eckroth
Sharon Ehresmann
Becky Eikmeier
Gary and Barbara Eilefson
Tim Eischens
Allen Ella
Natasha Ella
David John Elliott
Stephanie Elsner
Karen and Timothy Emanuel
Tara Emerson
Nicole Endres
Meaghan Engel
Steve Engel
Cindy Engelstad
Celia Ruth Engler
Karen Erazo
Robert and Maureen Erdman
Wilbert and Deloris Erdmann
Amanda L. Erickson
Bill Erickson
Etta Erickson
Nancy Erler
Floranne Ernste
Jean Estrada
Juanita Estrada
Molly Exsted
Yvonne Eyer
Richard and Judi Fabing
Kirsten Fabozzi
Dennis Fahey
Doug A. Falldin
Jeffrey Faralli
Jenny and Scott Faralli
Leonard and Sharon Faralli
Alicia Farmer
Joel Farmer
Marvin and Barbi Lund Farmer
Michael Fasteland and Marna Butler-Fasteland
Donald and Charlotte Fauteck
Julie Fedeler
Joan Fedt
Jerome and Jane Feigum
Jack and Margie Ferguson
Pat Fernholz
Marc Filister
Dawn Finholdt
First State Bank
Ali Fischer
Alicia Fischer
Susan Fischer
Monica J. Fitzgerald
Holly Flach
Stephanie and Brady Flatau
Eric Howard Flen
Joe Royce Flicker
Stacey Flippen
Michael Flom
Abbie Flynn
Anne M. Flynn
Michael Flynn
Erin Renae Foley
Mike Foley
Rhonda Forkrud
Shelly Forkrud
Fortress Financial Group, LLC (FFG)
Leah Fosness
Wanda Ann Foster
Teresa Fousee
Polly Franchot
Nancy A. Franczyk
Paul Frank
Alesia Franklin
April Franklin
Bill Fraser
Krista Frechette
Dana Frederick
John Frederickson
Nancy Jane Fredrickson
Charles Freiberg
Jeffrey Freier
Joel Philip French
Jolene Frenta
Greg Friberg
Jeff Friedli
Cynthia Friis
Lucy Fritz
Vicky Fritz
Bethany Froslie
Betty Froslie
Cynthia Froslie
Desiree Froslie
Karen Marie Froslie
Kelly Gallagher
Tom and Cindy Gallagher
Marjorie Gantman
Ben Joseph Garber
Brian Lee Garber
Scott and Carol Gardner
Rob Garofalo
Dan Geer
Christine Gefre
Mike Gefre
Charles Gehring
Orville Gehrke
Ben Gelschus
Jon A. Gelschus
Karin Gelschus
Laurie Gelschus
Diane Genelin
Carter and Amy Gerlach
Rebecca J. Geyer
Kim Gibbs
Brian Giesinger
Jerry and Pat Giesinger
Tara Giesinger
Chris Gilbert
Mary Giles
Ron Giles
Michael and Emily Gillespie
Kayley Gilmore
Abi Girard
Nicole Gisler
Christina Giunta
Tina Gladen
Todd, Jennifer, Kennedy and Davis Gohman
Ellen Goldner
Melissa Goltz
Leticia Gonzalez
Merrily Goodell
Sindy Goodwill
Garry and Barbara Gordon
Gary and Christina Gorham
Max Gort
Thomas Gort
James and Marcia Gowling
Les and Barb Graham
Roger Granberg
Diane Gray
Charles H. Green
Sara Greenbaum
Kevin Greenlee
Donna J. Greeno, MBA
Brent B. Gregory
Joyce Grenz
Joann Greseth
Terry J. Gries
Elizabeth Griesse
Mary Grieves
Robert Grimm
Todd and Lisa Grina
Coleridge Gross
Jule D. Gross
Melissa M. Gross
Wanda Gross
Roy and Mary Grossnick
Orval Gubrud
Joleen Guck
Eirika Gudrun Gudjonsdottir
Terry Guerink
Martha Guetzlaff
Trish Gunter
Teresa Haase
Continued on page 10…
9
contributors
Thank You to Our Contributors
Continued from page 9…
Lisa Habisch
Robin Mark Hachmeister
Nick Haddad
Gary and Karen Haffner
Jean Haggenmiller
Scott and Ruth Hallock
Glen Ham
Barbara Hamilton
Sandra Hamilton
Heather Hamilton-Benus
Diane Hammel
June Hammell
Marcus Hammerseng
Mike D. Hammerseng
Susan Hammes
Diane Hammond
Susan CB Hampton
Scott Hanlon
Erin Hansen
Janeen and Steve Hansen
Joelle Marie Hansen
Joshua Lee Hansen
Susannah Hansen
Virginia Louise Hansen
Brian Hanson
Christine Hanson
David Hanson
Leah Hanson
Mark and Barb Hanson
Michelle Hanson
Olena Hanson
Robert Hanson
Kevin Bruce Hanstad
Carrie Harmon
Charles Harris
Lorri Harrison
Dale and Rochelle Hartje
Matthew Hartloff
Sarah Hartman
Peggy Hase
Laura Hatch
Dane Haugen
Joseph and Lou Ann Hausladen
Thomas and Cindy Hedberg
Brenda Hedrick
Marilyn E. Heikes
Laurie Heldberg
Bob and Peg Helgerud
Kristen Helland
Steve and Deena Helminiak
Lon Hembree
Joanne D. Henderson
Alissa Anne Henkel
Brendan Henry
Joe and Amy Herbst
Terri Herbst
Marlys Herman
Beth Hermansen
Edwina Hertzberg
Robert Hertzberg
Ned and Barbara Hervas
Mimi and Ken Heyman
Robert and Julie Hicks
Amy Higuchi
Kira Hilden
Thomas Hilden
Gail Ann Hinshaw
Donnalee Hjelm
Darcy K. Hoag
Tasha Hock
Elaine and Robert Hoffman
Jennifer Hoffman
Barb Holden
David and Alice Holm
Jean Holm
Marlene Holm
Robert and Betty Holt
Sandra Holter
Megan Holzworth
Cathy Homan
Sem and Angela Hong
Dennis Hooten
Lousene Mary Hoppe
Jenni Horman
Bill Horn
Stan Howard
Alicia Huether
Christina Hughes
Julie Hughes
Mary B. Hughes
Robert and Sandra Hughs
Bill Hull
Todd and Mary Hunstad
Brad Hunter
Lindsay Jane Hunter
Ralph Joseph Husman
Amy Elizabeth Huston
Carolyn Hyland
Brian Idelkope
Marie Idelkope
Rikki Iglesias
Dale Ihry
Laura Ingvaldsen
Holly Marie Inniger
Dan Isaacson
Kathleen Izzo
Norman and Lori Jackson
Wendy Jacobsen
E.R. Jacobson
Jodi Jacobson
Julie Jacobson
Carol Jacoby
Daniel Jacques
Barbara Jagunich
10
Lupus News
David and Carol Janssen
Kari Jasper
David and Pamela Jaye
Sara Jensen
Jean Ruth Jirovec
Randy Jiskra
Richard Johnoff
Amy Marie Johnson
Barb Johnson
Carol Laurel Johnson
Dana Johnson
Danielle Johnson
Dennis Johnson
Elizabeth Johnson
Karri Ann Johnson
Kathy Johnson
Kerry Johnson
Kevin Johnson
Kyle Johnson
Leon and Virginia Johnson
Marcia Johnson
Philip E. Johnson
Renee Johnson
Roy Johnson
Samuel Johnson
Steph Johnson
Steve and DeeDee Johnson
Donna Johnston
Geraldine Jolley
Carole Jones
Christian and Kelly Jones
Michelle Jones
Kathryn Jordan
Myron Jordan
Tara Jordan
James Jost
Sonja Julius
Dave and Jan Jundt
Paul and Mary Juntunen
Lisa Juran
Claudia Justice
Susan Kadlec
Karalee and Daniel Kalkman
Siri Kalthoff
Jeffrey Martin Kamin
Amy Karlen
Martin and Mary Kasper
Kasson State Bank
Evan and Barbara Katz
Susan Keator
Robin Kelleher
Annette M. Keller
Dan J. Keller
Jim and Michele Kelley
Kristi Kellogg
Pam Kellogg
Jennifer Kendall
Darlene Kennedy
William F. Kennedy
Stephen and Julie Kenow
Vicky Kerbel
Apryl Keyes
Patcharathorn Khamdam
Kill Farms, Inc.
James and Paula Kill
Min Kim
Cammie and Rick Kimmes
Robert and Michelle Kiner
John Edwin King
Cathy Kinneman
Cindy Gayle Kittleson
Angie Klein
Dean and Lois Klein
Donald Klein
Kia Klein
Melissa Klein
Nicole Klein
Becky Klier
Jake Klier
Toni Klimowicz
Bryana Klofstad
Lindsay Klombies
Kristen Klos-Maki
Keith and Tiffany Knoke
Lana and Frank Knoke
Laura Knoke
Elaine Knutson
Mark Knutson
Angela Kom
James Konicki
Heather Konrardy
John and Patty Kosec
Robert Kostichka
Charles, Jr. and Brenda Kotasek
David and Theodora Kothe
Cassie Koza
Kozlak-Radulovich Funeral Chapel
KPMG
Robin S. Kramer
Melodi Krank
Sarah Krantz
Colleen Kranz
Marilyn Krause
Aaron Krauter
Kim Kroetsch
Sue and John Kroll
Michelle Krueger
Patty Krug
Christie Kruse
Monica Kryzer
Rochelle Kuechle
Jessica Kuehn-Hajder
Andrea Kuelbs
Jen and Brian Kulbersh
Roxanne Kumagai
fall 2010
JUNE 1 – SEPTEMBER 31, 2010
Mary Lou Kunnari
Jody Kuoppala
Allie Kurschner
Ben LaBathe
Chris Lionel Lachmansingh
Katheryn Lamb
Linda Lamb
Steve Lampi
Sue Landowski
Megan Lane
Robin Lang
James Langemo
Martin and Carol Langemo
Marty Langemo
Thomas Langemo
Christian Langheinrich
Mike Langstrom
Dan Langworthy
Donna Renae Lantz
Elsie Larimore
Earl and Gladys Larsen
Dennis Larson
Louis J. Larson
Sandra Mae Larson
Ted Lashinski
Caitlin LaTulipe
Laughs for Lupus
Carolyn LaViolette
Deb Lawrence
Steven Lawrence
Beth Lawrenz
Lisa Layman
Sudo Matthew Lecki
Joan Mary LeCuyer
Joseph Andrew LeCuyer
Lynda Lee LeCuyer
Rhonda LeCuyer
Bob and Jude Ledebuhr
Barbara Love Lee
Becky and Mark Lee
Champa Lee
Scott Lee
Toni Lee
Sue Leech
Leighera Leffin
Leigh Lehman
Christine Lehto
Dennis and Nadene Lenz
Kevin and Lisa Lenz
Nadine Lenz
Jolene Levahn
Tom LeVere
Marcus LeVesseur
Rachel G. Levitt
Katie LeVoir
Robert Lies
Marsha Lietz
Erica Limkeman
Linda Limpert
Linda L. Miles and Associates
Rea Lindberg
Ryan Lindbom
Stacy Lindbom
Ken and Carol Linde
Mark and Derice Littfin
Joyce Ann Lloyd
Gregory Logacz
Em Lokensgard
Lollipop the Clown
Filo and Randi Losalu
Norma Louis
Doug and Rachel Loven
Angie Lubenow
Mark Luby
Ryan Lucey
Ann and Rahn Lund
Louise Lund
Ronald and Shirley Lund
Barbara Lundberg
Darrin John Lundeen
Jeanine R. Luther
Lauren Lynch
Ahmed Maaraba
Timothy and Katherine Machacek
Dennis and Maria Mack
John and Karen Mack
Lois I. Mackin
Jenni MacNaughton
Marcia Macphearson
Eric Madsen
Maggie Madson-Brown
Steve Magee
Ed Magnuson
Fred Majerus
Mike Maki
Timothy Makins
Leslie Malmquist
Bonnie Maloney
Joseph Maly
Bennie and Deborah Mammen
Shellie Mammen
Emily Man
Brian Mann
Todd and Tami Jo Manthey
Gloria B. Marcus
Paul Marinko
Allison Marquardt
Marceline Marquardt
L. Marschel
Darcie Marsh
Andrew Marshall
Karen A. Martin
Rebecca Lynnette Martin
Larry and Sue Marty
Jordyn Massop
Amy Jo Matros
Lisa Mayer
Kelly Maynard and Lynn Varco
Deb Mayo
Amie Claire McArdell
Dan McArdell
Kaye McArdell
Lois McArdell
Helen M. McBride
Theresa McBroom
Kim McBurney
Cece McCan
Brigid McCarthy
Thomas McCarthy and Patti Hynes-McCarthy
Tom McDonald
Mary McKee
Lorae McKeever
Chris McKelvey
Randall and Wendy McKinnis
Deb McKnight
Tressa McLouth
Tressa E. McMahon
Amy McMullen
Jennifer Louise McNair
Barbara McNamara
Carmen McNamara
Chris McPartland
Michael and Deborah McPartland
Susan McPartland
Avis McPeck
Tracie Klug Melbostad
Tami Merkins
Diane Merz
Doug Merz
Sadie Merz
Lisa Meschke
Caleb Meyer
Jay Meyer
Kelley Jo Meyer
Michelle Meyer
Sharon Meyer
Michelle Cain
Patti and Steve Michels
Tom and Joyce Michels
Rick and Patti Michurski
Midwest Comic Book Assoc.
Arthur and Judith Mielke
Patrick Mikkelson
Mike Milbrath
Diana Miller
Jessica Jane Miller
LuAnn Miller
Miller’s Refrigeration & Air Conditioning
Shirley and Clyde Milligan
Theresa Milligan
Gordon Minty
Joanie Mix
Mark and Mary Mlynczak
Mo Tech Corp
Joshua Moberg
Stacey Modahl
Susan Moeller
Heather Mohler
Joseph Mohler
Robert and Kay Moline
Joe Molitor
Ben Mondeel
Stephanie Mondeel
Mark Mondeel
Kris Mondeel-White
Jennifer Monroe
Dr. N.A. and Karoline Monroe
Tom Monroe
Miguel and Sally Montesinos
Brianna Montgomery
Darin Montplaisir
Laura Moore
Natalie Moore
Patrick and Pauline Morgan
Tim Todd Mortenson
Morton Inn BP
Keith Mosher
Nancy Mudderman
Daniel Mueller, M.D.
Debbie Mueller
James Mueller
Karen Ann Mueller
Parvez Mukadam
Terence Mullen
Colleen Muller
Gary and Mary Munger
Mary and David Munson
Ray Munsterteiger
Dawn M. Murphy
Thomas Murphy
Catherine Murray
Patrick Murray
Paul Murray
Julie Nina Musech
James Nardini
Frances Nasiedlak
Brian Natwick
Tina Neameyer
Chad Nelson
Conrad and Marilyn Nelson
Douglas and Carol Nelson
Joel Nelson
Judy Nelson
Katie Michele Nelson
Kristen Michele Nelson
Michael Nelson
Nicole Nelson
Stephen and Althea Nelson
Tiffany Nelson
Continued on page 11…
contributors
Thank You to Our Contributors
Continued from page 10…
Sandra Neren
Susan Nesheim
Gertrude Ness
Susan Nettell
Catherine Neuschler
Cheryl Newman
Martha Newton
Alexander Vitou Nhep
Victoria Nhep
Maureen Nichols
Thomas Nielsen
Tami Nielson
Paula Nierengarten
Stacie Niesche
Patricia Nistler
Jennifer Nolan
Matthew Norman
Lois Rae Norstad
Karla S. North
Kallie Norton
Roger Norton
Glenn Nurdling
Samantha Nyenhuis
Christine Jo O’Brien
Lisa Ochsendorf
Garry Ohanian
Mary Sue Ohlhauser
Michelle Okposo
Barb and Jack Olinger
Bill and Shirley Olinger
Randy Olinger
Jamie and Florence Kek Oliver
Kirsten Olness
Bill and Karen Olson
Darcy Olson
Jen Olson
Jennie Olson
Judy Olson
Margaret Olson
Deann Olstad
Benjamin Ortega
Ron and Genny Osowski
Evelyn Otto
Mindy Otto
Sara Otto
Kelly Pap
Matt Papowski
Molly Papowski
Betsy Parish
Jonathan Parke
MariBeth Parks
James O. Partridge
Jan Partridge
Bill and Karen Patefield
Paul Patefield
William Patefield
Julie Patin
Pat Pauls
Diane Pawlak
Scott and Jodi Payne
Steve Peacock
Sandra Pederson
Patrick and Cindy Perkinson
Kevin Persinger
Judith Peters
Tim Petersen
Beth Peterson
Erik Peterson
Fay Peterson
Lance and Clarice Peterson
Linda Peterson
Mary Ann Peterson
Neil and Patricia Peterson
Ron Petrich
Nicole Petroff
Jeanne Phelon
Ben M. Phillip
Tim Pickal
Tom Pickal
Greg Pickert
Connie Piepho
Kathy Pierce
Pirtek Hoses and Assemblies
Dawn D. Pistulka
Richard and Karolyn Plaep
Allison Platt
Rachel Pletke
Ken and Dorrie Ploof
Debbie Poa
Shannon Podgorski
Hannah Poncin
John Poplin
Richard Poppke
Debra S. Porter
Tony Postiglione
Thomas Poul
Donna, Dennis and Deanna Pouliot
Sandy Preuss
Paul Pribbenow
Amanda Price
David Curtis Priebe
Bea Priewe
Mark and Amy Privratsky
William Prochnow
Nathan Prosser and Heather Sandberg
Brian Prymus
Michael and Dianne Pugh
Laurie Pumper
Marni Pumper
Drew Quiring
James Rademacher
Kori Ragan
Damaris T. Perez Ramirez
David and Janice Ramler
Thomas and Barbara Ramsden
Roger Randgaard
Lee and Clair Rasmussen
Peggy Ratigan
Therese Rau
Traci Rau
Tom and Mary Rauenhorst
Jim B. Rechtiene
Redpoll, LLC
Lori Reed
Chris Reese
Kathy Regan
Regency Homes
Elizabeth Reinhart
Lynn M. Reinhardt
Kari Renstrom
Sandra Revane
Fawn Marie Reynolds
Andrea Rice
Barb Rice
Kay L. Richards
Gail Marie Richardson
Kenneth J. Richelsen
Laura (Hemler) Richelsen
Michael Christian Richelsen
Amy Riddle-Swanson
Elizabeth Riebel
Rena Lexvold Riemer
Kristina Rients
April Marie Ristau
Michael and Jean Ritt
Carole Roberts
Craig Roberts
Kent W. Roberts
Larry Roberts
Natalie Gregorievna Roberts
Zach Roberts
Nancy Robertson
Amanda Robinson
Sheri Robinson
Patrick Rodger
Jennifer Rodgers
Tracy Rodriguez
Eric Roedel
John Roedel
Mary Ann Roedel
Amy Roell
Krysten Rohlik
Laurene Roller
Roncor Construction Inc.
Cheryl and Wayne Roosa
Amy Rosckes
Kim Rose
Judy and Dan Roth
Shirley Roth-Bradley
Eric Rothiev
Sally Rothmeyer
Vikki Rothmeyer
Erika Royer
Matt Royer
Radburn and Cathleen Royer
Tina M. Royer
Leah Rubin
Esther Rubinstein
Carol Ruda
Meredith Jean Rudh
John and Judith Rudie
Anne Rudigal
Mindy Rudiger
Steven and Diann Rudiger
Bradley and Lynn Ruhl
Sarah Ruhland
Emily Ruhsam
Jennifer Russell
Faith M. Ryan
John and Beverly Ryan
Kevin and Jeri Ryan
Michael William Ryan
Brenda Rystephanuk-Giese
Jim and Laura Salava
Kristen Salmela
Sylvia K. Salsbury
Brad Sammon
Missy Samounetry
Kirk and Nicole Sampson
Jessica Samuelson
Jason Sandberg
Pamela Dawn Sanford
Nicole Sankey
Kim Sauber
Annie Saukko
Naomi Savolainen
Renee Sayles
Robert and Ann Scarborough
Dave Schaible
Carie Schaitberger
John and Deborah Schannach
Hilmen and Barbara Scharberg
Beth Scharpman
Kathrin Rae Scherber
Carla Schilder
Elizabeth Schleifer
Monte Schmaltz and Amy Dahl
Jeff Schmicking
Andy Schmidt
Janell Schmidt
Kara Lynn Schmidt
Mary E. Schmidt
Nancy Schmidt
Alyssa Schmidtke
Beverly Schmidtke
Dave Schmit
Jessica Schmitz
Patrick Schmitz
Donna R. Schnerk
JUNE 1 – SEPTEMBER 31, 2010
Amy Scholz
Sarah Schornack
Heather, Hattie and Tori Schott
Spencer Schott
Sue J. Schott
William and Lona Schreiber
Linda Schroeder
Michelle Schroeder
Molly Katherine Schroeder
Jennifer Schullo
Sally Schultz and Linda Rose
Thomas and Shannon Schultz
Ward and Sharon Schultz
Georgeanne Schulz
Gary Schulz
Michele Schulzetenberg
Amanda Schuster
Stephanie Schwartz
Alan Schwietz
Scott Olmstead Builders, Inc.
Bonnie J. Scott
Thomas W. Scott
Douglas Seaton
Kathleen Seery
Chuck and Amy Segelbaum
Marty Segelbaum
Robert and Janet Selstad
Kimberly Senff
Melissa Sertich
Coleen Severson
Brian Sevigny
Vincent and Sheri Sexton
Deb Shafer
Jessica Shallow-Miller
Drew Shaman
Angie Shambour
Judy Shatek
Patricia Shauer
Aleesa Shaw
Jennifer Sheeham
Patrick Sheehan
Kerry and Wendy Sheridan
Margaret Sheridan
Sheila Sheridan
John and Cleone Sherman
Larry Shiller
Tamera Shintre
Shirts Plus
Mindy Jean Shoen
Peter Shrake
Allison Shultz
William Raymond Siford
Jean Sillman
Aaron Sime
Sokna Yat Simphilavong
Rose Singer
Donald Skaar
Melisa Skiba
Sallie Skinner
Eric Skogman
Lisa Skov
Ginny Sluss
Chris Smith
James and Judith Smith
Jessica Smith
Kayla Smith
Nathan Smith
John Sneden
Chris Soash
Sandra Solland
Solo Salon
Gayle Solum
Donna Sommerfeldt
Cheryl Sonnek
James Sontag
Karen Elizabeth Sorteberg
Trish Sorteberg
Steve and Marlene Souder
Lisa Chareundy Soundara
Glenn Spande
Barbara Spannaus
Rose Spaulding
Stacey St. Marie
St. Peter Family Dental Center
Linda Stack
Craig Steele
Nicole Steele
Allen Steely
Amy Steely
Stan Steely
Elmira Steigerwald
John and Sandra Steinbring
Eric Steinbrueck
Carol Emma Stellwagen
Matthew Stenerson
Jill Stephenson
Jeremy Stern
Maryann Stern
Ed Stevens
Helen Stewart
Cheryl Sticha
Penelope Stinson
Wade Stockman
Mike Stoeckig
Molly Stoffel
Stompin’ Grounds Lodge and Camping Inc.
Julie Stork
Karin Storm
Susan Strandberg
Rosella Strandemo
Lorie Ann Streeter
Marjorie Streeter
Kathy Strommen
Dennis Strune
Robert and Vicki Struve
Lisa Stuart
David Sturm
Shawna Stussy
Susan C. Suckow
Greta Suda
Deborah Booth Summers
Brenda Sumner
Kelley Sunderlin
Kathleen Sundseth
Sally Sundsmo
Emily Sutherland
Candace Swanson
Darla Swanson
DelRae A. Swanson
Lisa Swanson
Janet Sweetser
Brett A. Swensen
Diane Swensen
James and Charlotte Swenson
Julie Swenson
Michael and Brooke Swenson
Sharon Swentkofske
Stacey Swierenga
Vicki Talberg
Timothy Talbot
Kari Tarpey
Gladys Taylor
Jason Taylor
Karina Taylor
Dorothy Tegeder
Gary and Wendy Teigen
Heather Teisinger
Dennis Thanig
Renee Thanig
Hollan Bodine Thayer
Daryl and Addamaine Thietje
Jennifer Carole Thingvold
Jacki Anne Tholkes
Brian and Arianna Thome
Becky Thompson
John D. Thompson
Karla Thompson
Kathryn E. Thompson
Denise Tillges
Sandy K. Timm
Bob and Carol Tolzin
Joy and Jerome Toso
Diana Trickel
Ann True
David Charles Trumble
Carol J. Tsang
Christine Tsang
TSG Server and Storage
Kerry Tullis
Lana Tullis
Ryan Tullis
Brent Turner
Heidi Twedt
Ruthanne K. Twohig
Valerie Urban
Timothy P. Utter
Frank V.
Mary Kay Van DerGeest
Cathy Van Der Schans
Charles Van Houten
Rosemary Van Houten
Steve and Susan Van Vleet
Debi Anne Vanda
Mike and Raye Anne Vanda
Katherine Anne Varner
Jeanne Verdick
Shari Viall
Renee Villella
Edzier Vincent
Jennifer Vlasaty
Angela Vogt
Stacey Vold
Frank and Anita Vovk
Mary Vovk
Ken Vu
Lynda and John Wachsteter
Rebecca Sue Waggoner
Richard Wagner
Jeff Wald
Rita K. Waldor
Patricia Walker
Robert Walker
Terri Walker
Francine Wallin
Chad Walstrom
Lauri Walters
Tom Walz
Joe, Kelly and Addison Warren
Mary Tsai Warsop
Dannette Watkins
David Ray Watts
Lisa Weatherly
Kim Weaver
Robert G. Weber
Thom Weddle
Ron Weeks
Ann Weimann
Rachelle Weinand
Gwen Welckle
Kelly Renee Wellman
Jeremy Wells
Phillip M. Wells
Amy Wemple
Jon Wentz
Brian M. Werner
Denise Werner
Dorothy M. Werner
Sandy and Brad Wesely
Randee K. West
Continued on page 12…
11
MISSION STATEMENT: We serve those affected by lupus, raise awareness
and fund research in an ongoing effort to improve the lives of others.
fall 2010 Volume 34, Number 4
To Schedule
Pickup Service
Call 651-748-0400 or
go online to www.lupuspickup.org
Your generous contributions will enhance
the service mission of the LFM!
STORE LOCATIONS that accept
contribution items designated for LFM:
1) Unique Thrift Store
1657 Rice Street
Roseville
651-489-5083
2) Unique Thrift Store
2201 37th Ave NE
Columbia Heights
763-788-5250
3) Unique Thrift Store
4471 Winnetka Ave N
New Hope
763-535-0200
4) Unique Thrift Store
14308 Burnhaven Drive
Burnsville
952-898-0988
5) Valu Thrift
2145 Hudson Road
St. Paul
651-702-5920
Thank you to all of our faithful contributors
who use the pickup service to make donations
to the Lupus Foundation of Minnesota!
As a helpful reminder, we aren’t able to
take your computer monitors or TVs bigger
than 25" or those having turn style knobs,
and no console TVs, please. Again, we’re
grateful for your generous donations!
LFM
BOARD OF DIRECTORS
Chris McPartland, MBA
Chair
Thank You to Our Contributors
JUNE 1 – SEPTEMBER 31, 2010
Continued from page 11…
Susan West
Andrew and Kathryn Wetzel
David and Carol Whitaker
Chris White
Kerry White
Sheila M. White
Nancy Whittlesey
Faerol and John Wiedman
Lori Wiegrefe
Kathryn Wiemer
Edward and Mary Wilberg
Matthew Wiley
Kelly Willhite
Kimberly D. Wilson
Robert and Delores Wilson
William R. Wilson
Anthony Wimmer
Dan Wimmer
Alan Winegarden
Libby Winzeler
Michael and Mary Withers
Jim Wizik
Robert Wohlfeil
Charlie Wold
David Wold
Julia Wold
LuAnne Wold
Carrie Wolf
Donna J. Wollschlager
Cindy Woltman
Michael Woltman
Joe Wong
Cindy Woodward
Jackie Workman
B. and B. Worthing
Jean Wyman
Kevin and Susan Wyman
RaeAnne Yat
Melinda E. Yep
Sharlene Yord
Darlene York
Lori York
Thomas York
Craig Yost
Marcia Cortel You
Jill Young
Loretta and David Zacharias
Beth E. Zak
Kent and Linda Zeigler
Emily Zempel
Aaron Ziegler
Shannon Ziemer
Delmar and Virginia Zimmerman
Diane Zimmerman
Glenn and Alma Zimmerman
Helen Zimmerman
Jana Zimmerman
Kyle Zimmerman
Leroy and Ruth Zimmerman
Wayne and Kathy Zimmerman
Will and Sheila Zimmerman
Majorie Zook
Kathleen Zurek
Revonda Zurn
Jonathan Zweifler
Roberta Zweifler
Walter E. Cooney, MA, JD
Incoming Chair
Community Funds:
Beula Dale
Wilbur and Carolyn Wright
Aetna Foundation
Blaine Eagles # 4472
Community Health Charities Minnesota
Community Shares MN
Fraternal Order of Eagles – Ladies Auxiliary # 3282
Greater Twin Cities United Way
Honeywell International Charity Matching
on behalf of Jamie Biell
IBM Employee Services Center
JP Morgan Chase and Co Employee Giving Campaign
on behalf of Joan Fuchs
Kasson Mantorville Lions
Lucille A. Zimmerman Trust
Macy’s West G.I.F.T. Campaign
on behalf of Maryanne McNeary
Microsoft Matching Gifts Program
National Specialty Underwriters, Inc.
Nicollet Fund Drive
Saint James Community Fund, Inc.
The Saint Paul Foundation
on behalf of Robert and Diane Coderre
Thrivent Financial for Lutherans Employee
Giving Campaign on behalf of Becky S. Oliver
Tolstoy Community Health Fund
United Way of Central and Northeastern Connecticut
(UWCNCT)
United Way of Roanoke Valley, Inc.
United Way of Tri State
Wells Fargo Community Support Campaign
on behalf of Julie J. Sample, Jack K. Soriano
and Patricia A. Tanaka
Carlos Hansen
Janis Hansen
In Honor of:
Laura Duffee
Steven and Jane Clay
Amy Field
Delores and Virgil Goebel
Robin Wolpert
Barbara Dunn
In Memory of:
Mrs. Valerie Abram
John and Therese Cosgrove
Lola Baker
Joan Wong
Wendell Belisle
John and Therese Cosgrove
James Brenan
Wilbur and Carolyn Wright
Julie Bustos
Henry Christianson and Maureen Elkington
Linda Guertin
Pat Kaminski
Mark and Rhonda Richards
Scott and Amy Richards
James and Nedra Van Duyn
Dr. Joseph Connolly
John and Therese Cosgrove
Lynn Clarey
Past Chair
Scott F. Brown, MBA, CPA
Treasurer
David Hocking
John and Therese Cosgrove
Earl B. Larson
Marlene Friedrich
Norbert Meyer
Delores and Virgil Goebel
Jan O’Farrell
John and Therese Cosgrove
Marika Psara
John and Therese Cosgrove
Marlene Peters
The Family of Marlene Peters
Patricia Schamuhn
Mary DeMarce
LeeAnn Schmidt
Janell Schmidt
Abner Selvig
Wilbur and Carolyn Wright
Maribeth Shelendich
James Brugler
Dennis and Catherine Derricks
Brian and Elizabeth Dwyer
Richard and Gwen Elias
Catherine Hedberg
George and Susan Henly
James and Joan Burton Trust
Paul and Judy Johnson
Harold and Delrose Jones
Allan Kastanek
Clayton and Barbara Ochs
Sandra Ost
Sona and William Plummer
John Shelendich
Sunshine Fund
Loranda Watson
Elizabeth Story
John and Therese Cosgrove
Sheryl Voas
Bob and Laura Andrews
Ed and JoAnn Becker
Hank and Carol Crain
Gordon and Maxine Daulton
Ron and Marsha Ely
Ruth Fowler
James and Loretta Kelly
Billie LaCount
Carl and Dixie Larson
Allen and Terry Moore
Walter and Ellen Morgan
Jack and Darlene Mullikin
Michon Ordner
Thomas and Kim Scheel
St. Joseph’s Cardiac Rehab Staff
Ed and Joyce Stevens
Vadis Voas
Mike and Rosalyn Zytkovicz
LUPUS NEWS
Renee Sayles
Secretary
Shreyasee Amin, MD
David A. Barnes, MBA, CPA
Dale Allen Berry, CP
Ginger Sorvari Bucklin
Donna J. Greeno, MBA
The William Flies family dedicates this issue of
Lupus News to the memory of their daughter Marette.
Marette was committed to educating others about this disease.
We honor her for her determination to make a difference in the world.
We miss her dedication, her resolve… and her smile.
Robert Kratzke, MD
Pat Pauls, CPA
Lupus News is published quarterly by the Lupus Foundation of Minnesota. Please keep us informed
Ron Weeks
of address changes. The Lupus Foundation’s phone numbers are 952-746-5151 and 800-645-1131.
Our web address is www.lupusmn.org.
If you’re interested in receiving an electronic copy of this newsletter, please send a request via email
to [email protected].
© 2010 Lupus Foundation of Minnesota. All rights reserved.