butterfly spring 2011 | Volume 32 | number 1
“Everyone was going down the wrong road,”
Katie, at home in says Dave. “They were looking for juvenile
rheumatoid arthritis or lupus, not leukemia,
because an earlier blood test in Sioux Falls had
ruled out leukemia. There were no conclusive
findings at Mayo Clinic, so the family traveled to
the University of Minnesota looking for answers.
Doctors immediately admitted Katie, who was
becoming more ill, and diagnosed leukemia after a
“In many ways, the diagnosis was a relief,” says
Pam. “Katie only weighed 20 pounds and was not
standing much because her legs hurt so badly.
She had been sick from January until June and
“ This isn’t the
prognosis it used to be.
We have reversed
AT ToP: With her mom by
her side, Katie receives
ABovE: Katie’s team of
was suffering a lot.” Despite the fear evoked by
the word “leukemia,” Pam was comforted by the
doctors and nurses wishing doctor who told her, “This isn’t the prognosis it
her well on her cancer used to be. We have reversed the statistics.”
Katie’s parents signed her up for a clinical trial
which determined her treatment protocol. Doctors
then began an intensive regimen of chemotherapy
and radiation. “There were benefits to being part
leukemia changed my life of the clinical trial because the
To a 4-year old, childhood cancer might not look so bad. But to 30-year-old doctors were sharing
Katie Sonnichsen, looking back on 26 years as a cancer survivor is cause information across
for celebration. “As a result of my treatments and the love and support of my
family and friends, I am here 26 years later to share my story,” she says. (continued on inside
Katie was diagnosed with Acute Lymphocytic Leukemia (ALL) in 1984. She page 3) SurvivorShip
does not remember much about the situation except that her joints hurt, her Thriving after cancer
glands were swollen, and she had enough severe abdominal pain to warrant
an appendectomy. When the appendectomy failed to resolve the issues, and
severe headaches were added to the equation, Katie’s parents, Pam and Dave,
drove from their home in Sioux Falls, S.D. and brought her to Mayo Clinic, yet, SurvivorShip SerieS
2011 conference highlights
even a spinal tap did not reveal the disease.
Come fly with uS!
Time to Fly 2011
board of Directors
Bu SPRING 2011 | VOLUME
32 | NUMBER 1
about this issue
down the wrong road,”
“Everyone was going
Brian Burke Katie, at home in
says Dave. “They were
rheumatoid arthritis or
looking for juvenile
lupus, not leukemia,
test in Sioux Falls had
because an earlier blood
were no conclusive
ruled out leukemia. There
Chief meDiCAl ADviSorS findings at Mayo Clinic,
the University of Minnesota
so the family traveled
looking for answers.
John Wagner, M.D.
ly admitted Katie, who
Earlier this spring, I attended the 6th annual survivorship
leukemia after a
becoming more ill, and diagnosed
Julie Ross, Ph.D.
was a relief,” says
“In many ways, the diagnosis
20 pounds and was not
conference on the U of M campus. (You can read more
Pam. “Katie only weighed
her legs hurt so badly.
standing much because
January until June and
She had been sick from
Chief meDiCAl ADviSorS
emerituS “ This isn’t the
prognosis it used to be.
We have reversed
about this conference in this newsletter.) A woman
Mark Nesbit Jr., M.D. the statistics.
was suffering a lot.” Despite
the fear evoked by came up to me that morning and told me that she was
Norma Ramsay, M.D.
AT TOP: With her mom Pam was comforted by
her side, Katie receives the word “leukemia,”
isn’t the prognosis it
chemotherapy. doctor who told her, “This
celebrating her 34th anniversary of being cancer-free.
ABOVE: Katie’s team
used to be. We have reversed
doctors and nurses wishing her up for a clinical trial
Katie’s parents signed
her well on her cancer
treatment protocol. Doctors
journey. which determined her
regimen of chemotherapy
then began an intensive
This woman was a young child in the mid 1970’s, and
were benefits to being
ChAirperSoN and radiation. “There
of the clinical trial because
Leukemia changed my life doctors were sharing
so bad. But to 30-year-ol
cancer might not look
To a 4-year old, childhood information across
she was treated by Dr. Mark Nesbit. She was one of the
cancer survivor is cause
back on 26 years as a
Katie Sonnichsen, looking and the love and support
result of my treatments (continued on
for celebration. “As a share my story,” she says.
here 26 years later to SURVIVORSHIP
family and friends, I am page 3)
eX-offiCio Katie was diagnosed
with Acute Lymphocytic Leukemia
(ALL) in 1984. She Thriving after cancer
early — and rare — success stories in treating pediatric
except that her joints
does not remember much about the situation NEW BEGINNINGS
abdominal pain to warrant
John Hallberg and she had enough severe Hospital opens
glands were swollen, to resolve the issues,
the appendectomy failed
an appendectomy. When Katie’s parents, Pam and
Dave, SURVIVORSHIP SERIES
added to the equation, 2011 conference highlights
severe headaches were brought her to Mayo Clinic,
drove from their home
in Sioux Falls, S.D. and
even a spinal tap did not
reveal the disease. COME FLY WITH US!
Time to Fly 2011 cancer. Like our doctors today, Mark didn’t give up on
hoNorAry ChAirS these children.
Tom and Melissa Lehman
Thankfully, success stories like hers are not as rare as
Diana and Norm Hageboeck they were decades ago. Thanks to research, great strides have been made in developing life-
life ADviSorS saving new cures for young cancer patients. There are now more than 300,000 pediatric cancer
Del Johnson survivors in the United States. But, these cures often come at a cost. Survivors are at risk for
Deb Nesbit developing other cancers, heart problems, and other health challenges later in life. That is why
Cal Simmons your support of research that studies the long-term effects of cancer treatment is so important.
Sharon Waller Enjoy reading about the impact your support has in creating better long-term outcomes for
meDiCAl ADviSorS children battling cancer. You are truly making a difference.
John Kersey, M.D.
Phil McGlave, M.D.
Joe Neglia, M.D., M.P.H.
Brenda Weigel, M.D.
John hallberg, CEO
David Bestler @causejohn
butterfly is published by CHilDren’s CanCer researCH FunD®
Patty Jones phoNe 952-893-9355 web ChildrensCancer.org
Farley Kaufmann fAX 952-893-9366 twitter @childrenscancer
Rebecca McDaniel toll free 888-422-7348 Find us also on fACebooK
John Mendesh eDitoriAl iNquirieS If you have questions or comments,
Michelle Mesenburg please contact Kelly, 952-224-8481, or email@example.com.
Paul Perseke Children’s Cancer Research Fund is a national organization dedicated to eradicating childhood
Carolyn Riley cancer by funding the pioneering efforts in the prevention, diagnosis, treatment and cure of childhood
Steve Sear cancers at the University of Minnesota, a leader in pediatric cancer research. Many discoveries
Janet Stacey funded by Children’s Cancer Research Fund have revolutionized the way childhood cancer is treated
Kathie Taranto worldwide. The organization also provides education and supports quality-of-life programs for the
Carmen Thiede patients and their families who come for this world-class treatment.
2 I butterflyspring 2011 ChildrensCancer.org
(continued from page 1)
a larger network of hospitals across the than you,’” she laughs. “Yet, no
country,” says Pam. matter my size, I am extremely
Katie was hospitalized for much of thankful for everything I have
her initial treatment. over two years, been given and the love that
she received an aggressive treatment of surrounds me.”
various chemotherapy drugs, in addition Surrounded by two loving
to cranial radiation. The radiation was part parents, four siblings and
of the protocol given to Katie as a result friends, Katie celebrates her
of the clinical trial research. “We were cancer-free life by continuing to
concerned about that because we knew advocate for research. “Do not
there might be residual side effects,” says be afraid of the word ‘research,’”
Pam. “on the positive side, Katie never she says to others. “Through
had a relapse after treatment. That was being part of a study, you are Katie and her mom, in the midst of her treatment
wonderful. The cranial radiation may have doing your part to help someone else. for leukemia.
helped.” The treatments that I’ve undergone will any unexpected long-term abnormalities
Looking back on the experience, aid the doctors, nurses and scientists in as part of her ongoing clinical study. “So
Katie knows that leukemia changed her finding answers to what may cause these far, so good,” she says.
life. Starting school in the middle of an cancers, how we can prevent them and, “Today, I am amazed at the strength
illness was difficult, causing her to miss most importantly, how we can cure them.” and courage I see in the children who
many days for treatments and follow- While Katie is one of the fortunate are fighting this battle,” says Katie. “I am
up appointments at the University of cancer survivors who actually heard her proud to know that through the work of
Minnesota. In addition, there were side physician use the word “cured,” she doctors, nurses and survivors like me,
effects of the therapies. Katie developed continues to provide the University of these children have a greater chance of
a slight learning disability that still makes Minnesota with DNA samples to check for beating their illnesses.”
it difficult for her to comprehend what
she reads. Treatment also left Katie with
cataracts in both eyes that are being
monitored carefully in anticipation of future
Yet, despite the challenges, she heAlth riSKS
graduated from Augustana College with It has been shown that, to varying
a bachelor’s degree in social work, and degrees, long-term survivors of
she holds a diploma in culinary arts from childhood cancer are at risk of
Mitchell Technical Institute. Katie is now developing second cancers and
working at a restaurant in Sioux Falls other health conditions, such
and at a local grocery store. “I am still in as infertility and heart disease.
pursuit of the perfect job,” she admits, The degree of risk of late effects
“and have no idea what I want to be ‘when may be influenced by various
I grow up.’” treatment-related factors such
Friendships also have been difficult for as the intensity, duration, and
Katie. “I have not felt as though I fit in,” timing of therapy, as well as by
she says. “Yet, I have had some of the individual characteristics such as
most meaningful friendships a person the type of cancer diagnosis, the
could ask for.” person’s gender and age at the
Katie also struggles with her size as time of treatment, and genetic
the shortest member of her family. The factors as indicated by, for
treatment left her at 4 feet 10 inches. “I example, family history of cancer.
know the day will come when my nieces
and nephews say, ‘Aunt Katie, I’m taller
ChildrensCancer.org spring 2011 butterfly I 3
new study to detect heart problems early
Significant therapeutic strides have been exposed to an anthracycline and are at before those identified by traditional
made over the last three decades in the risk for premature cardiac failure which echocardiograms. An improved ability to
field of pediatric oncology resulting in can be asymptomatic and progressive. detect early heart problems will lead to
increasing numbers of children becoming Conventional monitoring with routine future interventional studies designed to
long-term cancer survivors and growing echocardiograms has been limited by prevent late adverse cardiac outcomes
into adulthood. Along with the increase an inability to detect signs of early heart after cancer therapy.
in survivorship is a growing need to disease. Thus, opportunities for early The study is being led by Drew Dietz,
address the unique health care needs treatment are missed. Strain and strain M.D., a third-year research fellow in
for these survivors. Survivors
face significant ongoing health
care needs, with two-thirds
reporting at least one chronic
“ The purpose of this research project is to determine
if changes in heart function among survivors of
childhood cancer can be detected before those identified
medical condition and more than
25 percent being classified as by traditional echocardiograms.
severe or life-threatening. Several
chemotherapies are known to have rate imaging is a new echocardiographic pediatric hematology/oncology/BMT at the
adverse long-term cardiac effects, technology that may be able to detect University of Minnesota, whose fellowship
with the anthracycline class being the signs of cardiac dysfunction. The purpose is funded in part by Children’s Cancer
most studied. More than 65 percent of of this research project is to determine if Research Fund. Final results of the study
childhood cancer survivors have been changes in heart function among survivors will be presented in late April.
of childhood cancer can be detected
4 I butterflyspring 2011 ChildrensCancer.org
Cancer survivor study
The Childhood Cancer Survivor Study (CCSS) is
a collaborative, multi-institutional research study
of individuals who survived five or more years
after diagnosis of childhood cancer. Advances in
cancer treatment have meant that today, nearly
80 percent of children diagnosed with cancer
will survive and be considered cured. As a result,
interest is growing in the long-term health of these
Health problems that develop years later as a
result of a survivor’s original cancer treatment are
known as late effects. The CCSS was started in
1993 to better understand these late effects. The
University of Minnesota is one of 27 participating
research centers that provided names of more
than 14,000 childhood cancer survivors who were
diagnosed between 1970 and 1986. All of the
empowering cancer survivors participants received at least one form of primary
through information technology treatment — surgery, radiation or chemotherapy.
Researchers at the University of Minnesota, led by Dr. Alicia In addition to initial surveys, researchers also
Kunin Batson, have developed a study using an online gathered information from the survivors’ medical
tool designed to help adolescent and young adult cancer records.
survivors understand their health risks. Researchers who have studied the CCSS
Previous studies have shown that data have identified a number of potential late
cancer survivors are the key conduit effects, including premature menopause, stroke,
for communicating essential information adult cancer and secondary cancers. It’s recommended that
about their diagnosis and treatment to survivors are not childhood cancer survivors receive ongoing health
their primary care physician. Surprisingly, knowledgeable assessments from doctors who are well-versed in
however, many young adult cancer these complications. (See page 6 for information
survivors are not knowledgeable about
about their about the Long-Term Follow Up Clinic at the
their diagnosis and treatments, nor are diagnosis and University of Minnesota)
they aware of the continuing health risks. treatments, nor Due to the significant changes in therapy
A poor understanding of their risks may for children with cancer over the past several
are they aware of
prevent survivors from taking important decades, recruitment is currently underway to
steps to improve their long-term health. expand the study to include
The study attempts to answer the health risks. approximately 14,000 more
following questions: survivors of childhood
identified a number of
When are childhood cancer survivors most receptive cancer, diagnosed between
potential late effects,
to learning details about their diagnosis, treatment and 1986 and 1999.
recommended follow-up care?
Will giving survivors access to an Internet-based, user-
friendly resource increase their understanding of their
health and the likelihood that they will communicate
concerns to their primary care physicians?
ChildrensCancer.org spring 2011 butterfly I 5
long-Term Follow-up Clinic
The Long-Term Follow-Up Clinic at University of Minnesota provides
health care to survivors of childhood and adulthood cancers.
The providers are specialists with knowledge and experience in the
treatment of cancer and the long-term effects of treatment. Long-term
follow-up care includes screening for delayed complications of therapy,
education about possible long-term effects, and monitoring of health
care needs based on risk factors associated with prior cancer treatment.
Physicians offer a comprehensive array of diagnostic and therapeutic
procedures and consultation including:
Personal disease history and therapy review
Screening for late effects
Education on reducing the risks of the late effects
Clinical exams and laboratory tests
Treatment summaries for the cancer survivor and his/her primary
Referral coordination to specialty care if needed
Dr. Daniel Mulrooney,
medical director of the Counseling on education and occupational concerns
Long-Term Follow-Up Information about current research and knowledge of late effects
Clinic, consults with a
patient. if you would like to learn more about how to enroll at the
long-term follow-up Clinic, call the clinic main line at 612-625-5411.
Dr. Michael Verneris
meet the researcher
Join us on an upcoming “Meet the
Researcher” tour of the University of
Minnesota Masonic Cancer Center
where you’ll have a chance to meet the
researchers whose pioneering work is
bringing us closer to eradicating childhood
cancer. You will visit the labs where future
treatments are discovered and learn
how your support of Children’s Cancer
Research Fund is assisting children and
their families who are impacted by cancer
each and every day.
The next tour will be on Tuesday,
May 17, led by Dr. Michael verneris and
Dr. Michael Burke covering the topic of to register for an upcoming tour, visit ChildrensCancer.org/tour or
leukemia. contact Karen Skewes at 952-224-8491 or firstname.lastname@example.org.
6 I butterflyspring 2011 ChildrensCancer.org
PHoTo By BRADy WILLeTTe
The new entrance of University of
Minnesota Amplatz Children’s Hospital.
The future of cures
The University of Minnesota Amplatz Children’s
Hospital is now open in its new home on the West
Bank. With its striking exterior and state-of-the-
art interior, the new hospital is a place of hope for
children and families facing childhood cancer and
other illnesses. The hospital opened its doors on
April 30 after months of final preparation and grand
opening events for hospital staff, donors and the
As we know, many children and their families stay in
the hospital for weeks and sometimes months at a
time, so there was a great effort to create a home-
away-from-home in the rooms and common spaces.
The new hospital boasts private, cheerful rooms
that are 35 percent larger than the national standard
and include a wall of windows and space for parents
to sleep, store their clothes, work on a computer, and
fix and share simple meals.
passport to discovery
The new hospital also connects to the University’s
mission of being “Driven to Discover” and chose to
incorporate the theme, “Passport to Discovery” in the
PHoTo By BRADy WILLeTTe
various common spaces.
For starters, there’s a large compass mosaic on the
lobby floor. Then each level of the hospital highlights
a different type of wildlife habitat and animal mascot.
For example, bone marrow transplant patients on the
4th floor will see their turtle mascot take them through
the “lakes” habitat. Each habitat theme is reflected in
several places throughout the floor — from the backlit
scenes that greet people coming off of the elevator to
the animal silhouettes on patients’ room signs.
Most important, the new building fills a need for a
space that is truly focused on children and families,
says Joseph Neglia, M.D., M.P.H., physician-in-chief
of University of Minnesota Amplatz Children’s Hospital
and chair of the Medical School’s Department of
Pediatrics. Dr. Brenda Weigel in a patient room.
“We now have an outstanding physical
space that reflects the quality of care we
have been providing for years,” he
says. “This new facility lets us offer
families a whole new level of service.” Bone marrow transplant patients on the 4th floor will see
their turtle mascot take them through the “lakes” habitat.
ChildrensCancer.org spring 2011 butterfly I 7
Derek and his mom Holly with his Minnesota
“grandmas” Nance (left) and Barb (right).
things on our own at home. If we needed
to go to the store — we simply got in our
car and went to the store.” But knowing
that things would be much different in an
unfamiliar city, and knowing that Holly
would be alone at times when Scott
needed to go back to Michigan for work,
the family gladly accepted the help.
Enter Care Partners family volunteers
Nance Alexander and Barb Gurovitsch.
Nance and Barb contacted Holly
immediately and began offering assistance,
support and friendship. Nance
and Barb have provided rides
Friends in minnesota Hospital, using to and from the airport, given
When Derek Hanewacker was only 10 stem cell therapy breaks to Holly while Derek was
months old he was diagnosed with Hurler treatments funded in the hospital and have helped
A Children’s Cancer Research Fund Program
Syndrome, a rare genetic disorder that in part by grants with errands and other needs.
causes progressive physical and mental from Children’s Cancer Research Fund. They also helped make valentine’s Day
deterioration, with death usually occurring The Hanewacker family arrived in special for Holly and Scott by staying with
before the age of 10. Devastated to Minnesota in January, 2011 to begin Derek so that the couple could enjoy dinner
learn of their only child’s life-threatening Derek’s workup for his umbilical cord together.
disease, Derek’s parents, Holly and Scott, blood transplant. Soon, the family was Nance and Barb have both felt the
conferred with their medical providers in introduced to the Care Partners program,
enormous rewards of helping families
their hometown of ortonville, Mich., to which provides volunteer support to during such a stressful time.
determine the best treatment option. They families facing treatment for childhood Holly states that the support that
soon learned that the best place to treat cancer and rare illnesses. Holly admits Nance and Barb have provided has been
Derek’s disease was “hands down,” the that she was initially hesitant to accept “wonderful,” but she is not the only one
University of Minnesota Amplatz Children’s outside help. “We were so used to doing who has benefited. Derek looked forward
to his visits with Nance and Barb, and the
feeling was mutual. Nance says that she
Care partners’ and Barb loved spending time with the
picnic of whole family, but especially with Derek
since “we are ‘grandma wannabes’ and
Hope get to be that with him.”
Saturday, June 11 As Derek continues to get stronger
LONG LAKE and gets closer to returning home, Nance
REGIONAL PARK and Barb know that they will keep in
NEW BRIGHTON touch with the Hanewacker family for
Join us for the 16th annual Care Partners’ reconnect with doctors, nurses, social years to come. As Barb explains why the
Picnic of Hope on Saturday, June 11 workers, Care Partners volunteers Care Partners experience is so special,
at long lake regional park in New and other support staff. volunteer “I have the opportunity to see and talk to
brighton, with food provided by picnic opportunities are also available. families while they are here for months at
pleasers. Picnic of Hope welcomes please contact Alex thwaites at a time and thus build a relationship. It is
current and former pediatric oncology 612-273-2951 for more information. extremely rewarding to listen to them and
and BMT patients, and their families to offer the support when it is most needed.”
8 I butterflyspring 2011 ChildrensCancer.org
new tax laws
The Federal Estate Tax,
Gift Tax, and Generation-
Skipping Transfer Tax began
a new chapter in 2011. The
U.S. Congress took action
on these taxes in legislation
which were passed shortly
before the close of 2010.
The new tax laws will apply
Each individual tax payer
What’s your legacy? will receive a $5 million
You do not need to be wealthy to show you care. People from every walk of life can estate tax exemption, and
embrace charitable giving as a part of their estate plan. You can make a charitable gift married couples will receive
by remembering Children’s Cancer Research Fund in your will, trust, or IRA/401K, or by a $10 million exemption.
naming us as an insurance beneficiary. Donors who notify The exemption between
us of their intent to make a planned gift are invited to join spouses is portable. This
Wings Society™, our giving club that honors and celebrates means that if the first-to-
donors who establish a planned gift to support cancer die spouse did not exhaust
research. Wings Society offers many benefits, including a his or her exemption,
special gathering to learn about the impact of charitable giving on cancer research. Most the remaining exemption
importantly, Wings Society members can make a significant impact on cancer research. amount may be transferred
if you’re interested in learning more about joining our wings Society, please to the surviving spouse.
contact Joslyn biever at email@example.com or 612-626-6430. The top taxable rate on
estate gifts and generation-
From LEFT to RIGHT:
Mary Jeffries, host skipping transfers will be
Francine Hitchcock 35 percent.
and Michelle Tiller.
The return of the estate
tax also brings new rules
for beneficiaries. Heirs
inheriting assets will
acquire a tax basis equal
to the fair market value
of the asset on the day of
special gathering in scottsdale ownership transfer.
Longtime friends and supporters of Children’s Cancer Research Fund, Francine
Hitchcock and James Davis, recently hosted a gathering in their Scottsdale, Ariz. home. The changing estate tax
The event featured honorary national chair of Children’s Cancer Research Fund, Tom landscape may affect your
Lehman. With the Scottsdale sunset and Pinnacle Peak in the background, over 60 plans for leaving a legacy
guests enjoyed great fellowship and heard remarks from Dr. Joseph P. Neglia, chair, gift to Children’s Cancer
department of pediatrics and physician-in-chief at University of Minnesota Amplatz Research Fund through
Children’s Hospital and John Hallberg, CEo of Children’s Cancer Research Fund. your estate. to learn more,
Guests had the opportunity to learn about recent discoveries in pediatric cancer contact Joslyn biever at
research and new, exciting treatment opportunities made possible with the opening of 612-626-6430 or via email at
the new Amplatz Children’s Hospital. firstname.lastname@example.org.
Thank you to the Lehmans, Francine and James for hosting an incredible evening and
sharing our mission with new and longtime friends of Children’s Cancer Research Fund.
ChildrensCancer.org spring 2011 butterfly I 9
By Cindy Chandler
BOARD OF DIRECTORS CHAIRPERSON
After a very long winter, we Minnesotans speak of having
“survived” the cold and dreary days and look forward to
celebrating the beautiful spring season. These feelings
of relief and joy are the same emotions felt by many
young cancer survivors and their families after finishing
their life-saving, rigorous treatments.
For the past 30 years, we have witnessed the miracles Connect families
and the advancement of treatments that have increased Lifesaving treatment is not always in your backyard.
the survival rate for many forms of childhood cancer. often, families travel long distances to receive the best
Although there is much joy and celebration, these care available, and stay for many months at a time. As
survivors face a higher risk of health issues later in life, a result, parents may split time between home and the
because of their disease and intense treatments. In hospital, incurring significant travel costs. Care Flights™
addition to the many physical problems, there are often connect families while a child is
emotional issues and learning disabilities that emerge. receiving treatment for cancer or
We now are beginning to realize that much needs other rare illnesses.
to be done to understand the long-term effects of As a Delta Air Lines SkyWish Charity partner, Children’s
treatment as these children become adults. This Cancer Research Fund relies on individuals like you to
critical research we fund explores how protocols and donate your extra miles in support of families in need.
treatment can be adapted to improve the long-term Your miles can make a world of difference. to donate
health and the quality of life for our survivors. Through your extra Delta miles, visit ChildrensCancer.org/Delta.
your financial contributions, we’re able to support the
annual Survivorship Series Conference at the University
of Minnesota. This educational conference for cancer
survivors, their families and health care professionals
provides information and guidance for those who want
to examine the long-term effects of cancer treatment or
stem cell transplantation.
Dawn of a Dream Save the Date will also go on this page
You can support this important work and research
of Children’s Cancer Research Fund by attending
one of our signature summer events – Time to Fly
2011, or the 20th Anniversary of Macy’s Passport
Presents Glamorama. You can also make an impact by
contributing your time as a volunteer or making a gift. SAturDAy SAVe THE DATe
Your continued support and generosity is appreciated
by all of our partners working diligently to find cures and
31sT annual Dawn of a Dream
Mark your calendars for another unforgettable
improve the outcomes for childhood cancer survivors. Novembe
Dawn of a Dream on Saturday, November 5.
Inspired by a child’s dream to help other children with cancer,
Dawn of the Dream remains our signature, not-to-miss event
of the year. Join us for this moving and entertaining evening at
The Depot Minneapolis, hosted by co-chairs Lisa Wagner and
Susan Prell. for more information, contact Amanda walston
at 952-224-8497 or email@example.com.
10 I butterfly spring 2011 ChildrensCancer.org
LEFT: Childhood cancer survivorship panelists with Dr. Alicia
Kunin-Batson and Dr. Daniel Mulrooney.
ABovE: one of the many breakout sessions that covered
many topics including nutrition, sexuality and medical late
effects of cancer.
Thriving after cancer
Nearly 300 adult and childhood able to advocate for themselves to lead full and
cancer survivors and their family productive lives.
members attended the 6th annual The conference opened with comments from
Survivorship Conference on April 2 at the University of Masonic Cancer Center director Douglas Yee, M.D., after which attendees
Minnesota to learn more about issues they may face listened to breakout sessions led by medical and professional experts in
after cancer treatment or stem cell transplantation. different aspects of long-term survivorship. Childhood cancer survivors
Attendees had the opportunity to learn more about new and family members participated in a panel discussion which raised
directions in cancer therapy; how to reduce the risk of other important issues for survivors’ long-term health and life goals. The
recurrence and second cancers; sexuality after cancer; conference concluded with a special theatrical performance of “Jonna’s
nutrition and healthy living; work and disability matters; Body,” a nationally acclaimed, emotional and comedic presentation that
medical late effects; integrative medicine and cancer describes the inner world of performer Jonna Tamases’ body as cancer
survivorship. The emphasis of the conference was on invades.
educating and empowering survivors so they are better
SeeN AND HeARD:
Childhood cancer survivor panel
Panel sponsored by Children’s Cancer Research Fund
Guests at the survivorship series KAtie: “Be your best
conference had the opportunity to hear advocate. Take notes, do
from three childhood cancer survivors research and ask questions LEFT To RIGHT: Panelists Katie Sonnichsen, Jeff Schultz and
as they shared their cancer-survivorship to make sure you’re ellie Beaver.
concerns and experiences. Led by getting the best care and
young guy and kept his spirits up. Jeff also said that
Dr. Alicia Kunin-Batson, panelists treatments.”
participating in speaking engagements and sharing his
included Katie Sonnichsen, Jeff Schultz Jeff: He took the advice story has been very therapeutic in terms of processing
and Ellie Beaver. of a young woman he his cancer experience.
When asked what advice they have met while going through
ellie: “It won’t last forever, no matter the outcome,
for families with a new diagnosis of treatment which was,
you will get through it and you are stronger than you
childhood cancer, here’s what the “Act as if you are cured.”
might realize.” She also shared that, in addition to the
panelists had to say: He found that having this
horrible experiences, there are many positive things
positive attitude made
that will happen throughout your journey.
him feel like a “regular”
ChildrensCancer.org spring 2011 butterflyI 11
Guests listen to speakers at Just Imagine.
Board member Janet Stacey talks with guests
at last year’s event.
of childhood cancer. Attendees will
also meet families who will share their
experience with pediatric cancer and why
individuals’ support of further research
is needed, now more than ever. The
event is a great introduction to Children’s
Cancer Research Fund, so we welcome
Join us at the upcoming fundraising your attendance and encourage you to
luncheon, Just Imagine, where guests invite friends, family and colleagues to
will learn about our positive impact on join us on May 19. if you are interested
the prevention, diagnosis and treatment in attending or have questions, visit
of childhood cancer. Guests will hear ChildrensCancer.org/Justimagine or
thursday, may 19 from University of Minnesota researchers contact Karen Skewes at kskewes@
NOON TO 1PM | MINIKAHDA CLuB about recent progress in the treatment childrenscancer.org or 952-224-8491.
benefactors Circle stem cell transplantation.
The Benefactors Circle was formed Dr. John Wagner created
21 years ago by Sharon and Joel the treatment protocol at
Waller to raise money for Children’s the University of Minnesota,
Cancer Research Fund. over the years which is now used worldwide.
— and more than $2.4 million raised Dr. Wagner and his team are
— this fund has made it possible for now trying to eliminate the
University of Minnesota researchers problem of immune system
to earn larger federal grants, hire recovery after transplantation,
new researchers and allow projects which the Benefactors
in financial jeopardy to culminate. funding could help support.
Annually, members gather for a dinner You are invited to join the
in late spring, hosted by the Wallers, Benefactors Circle with a
to celebrate research progress and donation of $1,000 or more,
learn about new research funding and attend the celebratory
opportunities. dinner on June 5. to indicate
This year, the Benefactors Circle your interest, please email
members are looking to help fund a Jenny phyle at jphyle@ Joel and
research program for umbilical cord childrenscancer.org.
12 I butterfly spring 2011 ChildrensCancer.org
Thank you to the following organizations, groups and individuals who champion
our cause by hosting fundraisers to benefit Children’s Cancer Research Fund.
Date for life Joe rauscher’s 18th annual
FuNDRAISING CHAMPION: memorial ski race
it’s Just lunch FuNDRAISING CHAMPION: Joe’s Sporting goods
The 3rd annual event, which Joe Rauscher’s 18th Annual Memorial Ski
features Twin Cities’ bachelor Race was held on Saturday, March 12 at
and bachelorettes was held on Wild Mountain Ski
February 10. The event took Area. The team
dating to a new level, where from Joe’s Sporting
attendees participated in a live Goods worked
auction to bid on dates with 10 hard again this
of the 28 singles. Held at the year to host a fun
Fine Line Music Café, the event competition with more than 250 participants.
also featured a performance by Proceeds from the event benefit Children’s
Laura dedicated her samba to
Tim Mahoney and stellar silent Cancer Research Fund and American Molly, a recent cancer survivor
auction items and raffle prizes. Cancer Society. Since the event began, who shares her love of dance.
overall, the event broke a new we have received more than $100,000,
record by raising $42,500. Thank including this year’s total of $10,420. Thank Dancing with
you to presenting sponsor, you Joe and the team at Joe’s Sporting the Twin Cities’
It’s Just Lunch. to view
photos and learn more, visit
Goods for your commitment to our cause!
to view photos from this year’s event, visit
laura Schara and
Arthur murray Dance Studios
Arthur Murray Dance Studios hosted
Karma Yoga project its 2nd annual charity event featuring
FuNDRAISING CHAMPION: Corepower yoga & Spa, edina dance performances from some of
CorePower’s Karma Yoga program is rooted in the belief that selfless service is Twin Cities’ best known celebrities.
an important aspect of yoga, and offers this program to their students. Children’s The event, held on February 19,
Cancer Research Fund was the beneficiary of their Karma Yoga Project held raised money for local charities by
February 26-27 at their Edina location, receiving 10 percent of membership proceeds having each competitor select a
and sales from the weekend. Proceeds from the project totaled $1,500. Thank you charity beneficiary and compete
and “Namaste” to our friends at CorePower Yoga & Spa, Edina! for the most votes. Laura Schara,
visit Corepoweryoga.com to learn more. Macy’s fashion correspondent and
outdoor Tv host, participated in the
competition and chose Children’s
linda’s photography held their 17th annual spring photo promotion, Bunnies and Cancer Research Fund as her
Lambs, during the month of April. Proceeds from photo sessions benefit Children’s charity. In the end, Laura’s high-
Cancer Research Fund, bringing Linda’s lifetime giving to more than $22,000. energy samba routine received the
Thank you to bmw of minnetonka for their generosity from the car wash program most votes and she was crowned
available every Saturday in March and April. the celebrity champion. Thank
you Laura and her partner Danny
Thank you to france 44 wine & Spirits for their continued partnership in raising
Ross. for more information, visit
awareness and donating to our cause through their recent weekend promotion
during which we received 10 percent of all sales.
ChildrensCancer.org spring 2011 butterflyI 13
LEFT: KS95’s Dez interviews a phone bank
volunteer during the live broadcast..
BELoW: KS95 Morning Show’s Ryan and
Melissa talk with Chris, a Radiothon alumnus
from our very first Radiothon broadcast.
Mark your calendars for the 13th
10 event, to be held December 9-10,
Ks95 for Kids® radiothon DeCember
KS95 held its 12th annual KS95 for Kids KS95 For Kids raises money disabilities. Families also visited the Mall
Radiothon December 10- for Children’s Cancer of America to participate in live interviews
11 at the Mall of America, Research Fund and throughout the weekend, getting the chance to
during one of the biggest Gillette Children’s meet their favorite KS95 radio personalities.
blizzards in Minnesota Specialty Healthcare. This year’s event brings the overall Radiothon
history. Despite the storm, During the Radiothon, total to more than $11.6 million for Children’s
KS95 listeners stepped up listeners heard the Cancer Research Fund and Gillette Children’s
in a big way, contributing inspiring stories of Specialty Healthcare.
more than $473,000 to help children affected to hear the kids’ stories or to view photos
children facing medical challenges. by cancer and those living with from the event, visit KS95forKids.org.
Thank you to the more
than 73 families and school
groups who collected
change this spring as part
of the KS95 for Kids™
Change for Kids program.
In total, more than
$35,000 was collected
from groups across Minnesota
and benefits both Children’s Cancer Research Fund and
our partner, Gillette Children’s Specialty Healthcare.
Individuals who contributed at least $100 enjoyed
a private party at Nickelodeon Universe at Mall of
America, hosted by KS95’s on-air talent. Guests enjoyed
KS95 for Kids Change for Kids participants at
Mall of America celebrating at their private party. unlimited rides, a meet and greet with Nickelodeon
characters like SpongeBob SquarePants, along with
snacks and refreshments. A big thanks to KS95 for their
14 I butterfly spring 2011 ChildrensCancer.org
Time to Fly 2011
Saturday, June 25
HARRIET ISLAND REGIONAL PARK
Join us at Time to Fly 2011! Already in
its 9th year, Time to Fly is our fastest
growing event featuring walking and
running events, a popular kids fun run and
entertainment for the whole family. Form
a team, invite your family and friends, and Sign up today and get started! visit
celebrate the brave children in our lives ChildrensCancer.org/timetofly.
who have battled cancer. questions? Contact
Time to Fly 2011 will feature: Amanda walston at 952-224-8497 or
10K Run, 5K Run, 5K Walk, Kids’ Fun Run firstname.lastname@example.org.
Technical shirts and race goodie bags
for adult walkers and runners
T-shirts and ribbons for youth
Thank you to our sponsors:
participants gold Sponsors
Family entertainment area with games,
prizes and interactive fun for children of
Awards for individual and team Jay Mooreland
C ERTIFIED F INANCIAL P LANNER TM
Through your support of events like media partners
Time to Fly, Children’s Cancer Research Minnesota Monthly
Fund can continue to make medical Midwest Home Magazine
history and most importantly, help children
lead healthy, happy lives.
New THIS yEAR!
Fundraising through Facebook is a fun and easy AT ToP: enthusiastic teams are the
way to get your friends and family involved in Time to Fly! Just reason Time to Fly is our fastest
register for the event and download the application from the growing event!
MIDDLE: A runner from the Social
email confirmation you receive afterward. We also have a special
Butterflies team approaches the finish
Facebook page created for Time to Fly event updates and line.
announcements. Search time to fly and “like” us today! BoTToM: Time to Fly is a great family
ChildrensCancer.org spring 2011 butterflyI 15
7301 ohms Lane, Suite 460 Minneapolis, MN
Minneapolis, MN 55439
Glam friday, August 5 | ORPHEuM THEATRE
Don’t miss the 20th anniversary of
the Twin Cities’ most anticipated
summer event, Macy’s Passport
Presents Glamorama. Macy’s legendary fashion
and entertainment show will once again feature
fall’s hottest fashion trends, musical entertainment
by a national recording artist and a fabulous post-
party experience on Macy’s rooftop, all benefiting
Children’s Cancer Research Fund. As a friend of
the organization, you can reserve your tickets
before they go on sale to the public. visit