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Board of
Directors
Rhonda McKeever,
Chairman
Denise Doria,
CFO
Patti Lawler,
Secretary
Ragan Cantrelle, Family
Outreach
Mitali & Rishi Dave,
Strategic Planning
Jacque DenUyl, Young
Adults / Networking
Shari & Tom Hume,
Fundraising / PR /
Communications
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Advisory
Council
Family
Outreach
Kalee
Carpenter
Casey
Dean
Suzanne
Edison
Jill
Szysko
Young Adult
Outreach
Myah
Stuemke
Amy
Maier
Medical
Collaboration
Julie
Wohrley
Social
Media
Annie
Mitchell
Fundraising
Lisa
Forgas
Robert
Slater
Damon
Smedley
Grant
Writing
Kelly
Gaither
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FEATURED
STORY
Cure JM Wins $250,000
Pepsi Refresh Grant
In
August, Cure JM won the Pepsi Refresh national
contest for a $250,000 grant! Every penny
of the $250,000 will go towards research into a
cure for JM. The competition among
1,200 causes was incredibly intense, with Cure
JM shifting in and out of the winning position
up until the very last hours of
voting.
According
to co-founder and mother of a child with JM,
Shari Hume, "What we lacked in size, we made-up
for in passion and perseverance. The
incredible help and heroics of our family,
friends and neighbors in the Pepsi Refresh
contest enabled Cure JM's dream to become a
reality. Winning the grant reinforced our
belief that a small group of people can change
the world!"
Cure
JM supporters used every tactic possible to win
this grant, from social media and emails, to
writing the voting information on their
cars. Teachers asked students to text
their vote during class. Principals
allowed entire schools to vote during morning
announcements. Ministers asked
congregations to text their vote; musicians
asked their audience to vote. Kids stood
on street corners with signs to vote.
Schools, baseball leagues, etc. sent out mass
emails about voting. NFL team, New Orleans
Saints, tweeted throughout the month.
Hume
mentioned several especially creative ways of
getting votes, including a college student who
took a bullhorn after a fire drill and asked his
classmates to vote. She also heard from a
friend who texted her vote for Cure JM on the
last day of voting, just after giving birth in
the Labor and Delivery Room!
According
to Cure JM Chairman (and mother to a child
battling JM), Rhonda McKeever, "the best part
about winning this grant is giving the kids with
JM a renewed sense of hope….hope for better
treatments, hope for better understanding, and
hope for a cure." Additionally, McKeever
said "the entire JM community has ignited into
action at a level never experienced
before. More fundraisers are being held
across the country, and even in other
countries."
The
grant will be used to continue funding critical
research.
·
Extend Cure JM Program of Excellence in JM
Research in Chicago
·
Conduct pilot study on cardiovascular risk in
children with JM
·
Complete study to identify genetic risk factors
by Dr. Miller and the
International Myositis Genetics Consortium
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WHAT'S
NEW
Cure JM Chicago Regional
Conference Brought 40 Families Together and
Raised $90,000
On
September 11th-12th, Cure JM held a Regional
Conference and Fundraising Event in
Chicago. Although all JM families were
welcome, the event focused on young adults with
JM and was led by Amy Maier and Myah Stuemke,
two young professional women with JM who serve
on Cure JM's Advisory Council. 40 families
and nearly 100 people were involved in the
events over the weekend, raising $90,000 for
Cure JM.
The
Conference started with a tour of Dr. Pachman's
lab at Children's Memorial Research
Center. Cure JM has supported this Cure JM
Program of Excellence in Juvenile Myositis
Research for four years. Attendees were
led through the lab by researchers viewing
various stations of study. Following the
tour, there was a formal scientific presentation
of "Young Adults with JM: Research &
Results." The objective of the
presentation was to inform young adults of their
JM-related health risks based on recent medical
developments.
Speakers
included:
·
Lauren M. Pachman, MD. Director, Cure JM
Program of Excellence in
JM
Research Professor, Department of Pediatrics,
Feinberg School of
Medicine,
Northwestern University
·
Timothy Niewold, MD. Assistant Professor
of Medicine; Section of
Rheumatology, The University of Chicago,
Pritzker School of Medicine
·
Simone Sredni, MD, PhD. Research
Scientist; Pachman Laboratory,
Children's Memorial Research Center
·
Megan Curran, MD. Assistant Professor,
Department of Pediatrics,
Feinberg School of Medicine, Northwestern
University
·
Shawn Rose, MD, PhD. Fellow, Rheumatology,
Department of
Medicine, Feinberg
School of Medicine, Northwestern University
Lively
breakout sessions followed the scientific
programs. Children spent the afternoon
socializing and creating signs for the runners,
centerpieces for the dinner, and thank you gifts
for the Pachman staff and speakers.
At
Saturday evening's dinner, the Pachman team was
honored, a raffle was held, and speakers
included the event organizers (Amy Maier, Myah
Stuemke, Jacque DenUyl), Cure JM Chairman Rhonda
McKeever, and Dr. Lauren Pachman.
On
Sunday morning, Cure JM was an official charity
for the Chicago Half Marathon & 5K along
Chicago's south Lake Shore Drive. Over 25
brave Cure JM volunteers gathered at 4:30 a.m.
to work an aid station and to greet over 30 Cure
JM runners. All gathered at the Cure JM
tent sporting our new young adult designed,
black and green t shirts making Cure JM an
outstanding team of the weekend. The
successful event raised $90,000 to support our
programs. Many thanks to all
involved. |
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2nd Annual Cure JM
Concert in Portland, Oregon Raised over
$35,000
The
Hillsboro Stadium near Portland, Oregon was
rocking on September 11th as music fans and Cure
JM supporters alike came together for the second
annual Cure JM concert. With nearly 800 concert
goers and over $35,000 in proceeds, the concert
was a huge success. Season Six American
Idol contestant Blake Lewis headed up the
concert along with Savannah Outen, Jessica
Lerner, and Shelby Marie.
Concert
organizer and dad to a child with JM, Damon
Smedly, remarked: "Once again the stadium crowd
was filled with smiles and energy of a loving
and giving community." Cure JM co-founders
and JM parents, Tom and Shari Hume and their
children attended all the way from southern
California, and Shari remarked, "There was just
so much positive energy! I wish all JM
families could have been there."
Here
are videos and more pictures from the
concert.
Hey
Mason - Jessica Lerner
Song
for Cure JM - Blake Lewis
Click
Here for More Photos of the
Event |
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Sign Up for 2011 Cure JM
National Conference & Fundraiser: June
23rd-25th in Seattle
Our
next National Conference and Fundraiser will be
in Seattle on June 23rd-June 25th in conjunction
with Seattle's Rock & Roll Half Marathon and
Marathon on Saturday, June 25, 2011.
This
is a wonderful event, and we encourage all of
you to attend. JM patients and their
families will have the opportunity to mingle and
form new friendships with others who are going
through this same difficult journey. As
one of the young girls who attended last year's
national conference in Austin said, "Being here,
with all these other JM kids, makes me feel not
so alone." In addition to meeting other JM
families, you will have the opportunity to hear
medical experts on JM present their latest
updates on treatment and research.
The
event will kick-off on Thursday, June 23rd with
an informal welcome dinner. Friday,
June 24th will consist of a variety of breakout
sessions and research updates for JM
families. We have already confirmed the
participation of Dr. Lisa Rider (NIH), Dr. Ann
Reed (Mayo Clinic), and Dr. Lauren Pachman
(Chicago Memorial Research Center / Cure JM
Program of Excellence). On Friday
evening, we will have a recognition dinner.
The
conference culminates on the morning of
Saturday, June 24th with Seattle's Rock &
Roll Half Marathon and Marathon, where Cure JM
supporters will run/walk or volunteer along the
race route to raise money to continue JM
research. Many families have found
that one of the best ways to channel feelings of
helplessness, frustration and grief is to take
action. Even if you have never been a
runner, there is plenty of time to train for
Seattle's Half Marathon and Marathon, or
alternatively, you can volunteer along the race
route, and help raise funds for a cure.
This national fundraising event has historically
been Cure JM's largest fundraiser, and it is
largely dependent on wide participation from the
JM community.
If
you are interested in participating in Cure JM's
national event, please sign-up
to set-up your personal
fundraising page for Cure JM at:
www.firstgiving.com/curejm.
If
you are planning on running in either race, you
will also need to complete your race
registration at: http://seattle.competitor.com/.
All runners should complete their race
registration ASAP, as we have been advised that
the race usually sells out.
We will
be posting hotel and meeting details about the
event on www.CureJM.org
very soon. Families are
welcome. Supervised activities for
children will be available. We hope you
can join us.
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Building on Our Momentum
to Find a Cure
Cure
JM is incredibly fortunate to have such a strong
group of committed families in this fight
together – winning the Pepsi Refresh Grant was
certainly a testament to that strength. As
we build on our momentum towards finding a cure,
our all-volunteer organization needs
your help.
Many
of you shared your JM journey with a broader
group of friends and family during the Pepsi
Refresh contest. One powerful way to build
on this increased awareness is to set up your
personal fundraising page for Cure JM on www.firstgiving.com/curejm
with a picture of your family and a brief
write-up of your JM journey. Then include
a line in your holiday cards/letters/emails with
your fundraising page's link. Please note:
you do not need to attend the Cure JM National
Conference to set up a fundraising page.
Be sure to encourage your friends and family to
check whether their companies match charitable
donations.
For
more fundraising ideas, go to http://www.curejm.com/teamjm/fundraising_ideas.htm.
More
broadly, please consider where your talent and
passion could best be harnessed to help Cure JM
support our families and find a cure.
Whether you choose to lead a local Cure JM
support group, help with marketing, or help
research and write grant applications, your
efforts on behalf of our children could make a
huge difference. Please email
info@curejm.com or call 760-487-1079
if you would like to be more involved
with Cure JM.
Thank
you on behalf of all the children and families
affected by JM!
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