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CONFERENCE
RECAP
WHAT'S
NEW
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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 National
Conference: Cure JM Nears $200,000 Fundraising
Goal
Thank
you to the 50+ families who attended the Cure JM
National Conference held on June 23rd-June 25th
in Seattle! We hope you enjoyed meeting
one another and learning not just from the JM
researchers, but from one another.
For
those of you unable to attend, the conference
kicked off on the evening of June 23rd with an
informal welcome dinner where families had the
opportunity to meet one another. On the
morning of June 24th, Cure JM facilitated
workshops including JM Best Practices, JM
Journey as a Young Adult (for parents and JM
young adults), JM Young Adults Making a
Difference (for JM young adults), and JM Coping
Skills. The afternoon on June 24th was
the formal educational session with research
updates from JM researchers followed by an
open Q&A. On the evening of June 24th,
Cure
JM Hero Awards were given out at a
recognition dinner.
The
next morning, on June 25th, more than 100 Cure
JM supporters participated in the Seattle Rock
& Roll Half Marathon and Marathon, helping
to raise over $192,000 for JM research.
Even if you were unable to attend,
you can still help
us reach our $200,000 goal!
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National
Conference: Coping Skills
Workshop
by Suzanne
Edison, Cure JM Family
Support Director
I
started this years Coping Skills workshop
asking everyone to close their eyes and focus on
their hopes and fears in this group and then jot
it down on paper. I often read a poem I have
written about one my experiences on the JDM
journey. Then, I give a brief summary of what I
have come to believe, through my experience and
research into families living with a child with
chronic illness, are the effects of JDM on
families, from diagnosis forward. This
includes a look at various points in the
grieving process, a reflection on what in our
lives changes once a child is diagnosed
(practically everything), areas of stress,
health, financial and social relations.
Then,
I ask folks to break into smaller groups and
give them at least an hour to talk amongst
themselves about areas of concern, what they do
that seems to help, what they have learned. This
is the part, akin to a secret craving for
chocolate or cigarettes, where no one really
wants to stop when the time is up. I circulate
from group to group, trying to discern themes
that I hear or questions that arise.
Back
together as a whole group, we open up the
discussion and list all the things we know helps
us to cope and live better as parents and
families. We talk about resources weve
found and things we wished wed known earlier
(always helpful for the newly diagnosed
families) about putting JM in its place and
living more fully.
There
are some good articles I have found to help
remind us that the caretaker needs to be cared
for, too. We parents need to find ways to
support ourselves, replenish our drained
storehouses, in the midst of caring for
others. |
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National Conference: JM
Research Updates
by Jacquelyne
DenUyl, Cure JM Board
Member
Dr.
Ann Reed, Dr. Lauren Pachman, and Dr. Lisa
Rider
The
Cure JM Educational Forum in Seattle continued
on Friday afternoon with presentations from
three doctors with JM expertise, Dr. Lauren
Pachman, Dr. Ann Reed and Dr. Lisa
Rider.
After
a welcome from Cure JM Chairman, Rhonda
McKeever, the afternoon began with Dr. Pachmans
presentation entitled: Cure JM
Program of Excellence: Research
Update*. Dr. Pachman
is the director of The Cure JM Program of
Excellence in Juvenile Myositis Research in
Chicago. She also conducts a clinic
dedicated to JM patients at Childrens Memorial
Hospital, Chicago, where more than 200 JM
patients are under her care at any given
time. Her research focuses on the
epidemiology and molecular and genetic
mechanisms related to the origin of the symptoms
of JDM as well as the calcifications that occur
in more than 30 percent of juvenile myositis
patients. Dr. Pachman is grateful for Cure
JMs support resulting in over 15
publications in 3 years and whose funding
was critical in attaining a $1.9 million
grant from the NIH/National Institute of Nursing
Research for her study entitled Disease
Chronicity in Juvenile Dermatomyositis (JDM):
Epigenetic Clues.
Dr.
Ann Reeds presentation, entitled, The Future of JM
Research*, gave us a
glimpse in what is to come. At the Mayo Clinic,
Dr. Reed chairs the pediatric rheumatology unit
and rheumatology research, which includes
serving as Director of the Division of Clinical
Trials and Study unit. Her focus has been the
care and study of myositis and juvenile
myositis. She chairs the Childhood
Arthritis and Rheumatology Research Alliance's
(CARRA) myositis committee, which aims to
develop best-care protocols, data systems and
data points and sample repository. She recently
became Chair of the Department of Pediatrics,
making her the first woman to hold that position
in a major department at Mayo Clinic.
The
formal presentations concluded with Dr. Lisa
Rider, presenting JM, Genetics
and Environmental
Studies*. A pediatric
rheumatologist, Dr. Rider is Deputy Chief of the
Environmental Autoimmunity Group, National
Institute of Environmental Health Sciences,
National Institutes of Health. She is also
Clinical Professor of Medicine at The George
Washington University Myositis Center, a Cure
JM-funded endeavor. Dr. Rider is lead pediatric
investigator in the MYOGEN study to identify
genetic risk factors for dermatomyositis,
co-chair of the International Myositis
Assessment and Clinical Studies Group, and the
principal investigator of the Childhood Myositis
Heterogeneity Study national registry Cure JM
helps support. The U.S. Public
Health Service recently named Dr. Rider
Physician Researcher of the Year in
recognition of her substantial basic and
clinical research on myositis.
Our
educational forum concluded with a JM Expert
Panel Discussion where participants could submit
questions to this esteemed panel. Cure JM
appreciates the time dedicated to us by these JM
experts.
* Presentations
are being posted on www.curejm.org as they become
available. |
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National Conference:
Education Forum for the Medical
Community
by Rhonda McKeever, Cure
JM Chairman
Cure
JM Foundation co-hosted with Seattle Childrens
Hospital a JM professional educational forum
developed specifically for the medical community
on Thursday, June 23rd. The event kicked
off with Pediatric Grand Rounds on the topic of
Juvenile
Myositis: From Seattle Bedside to
Bethesda by Dr. Lisa
Rider. The Grand Rounds was attended by
approximately 100 medical professionals and was
webcast by the hospital.
Following
the Grand Rounds presentation, approximately 50
medical professionals stayed for the remainder
of the day to hear research updates, similar to
what was presented to the JM families, by Dr.
Ann Reed and Dr. Lauren Pachman. To
help facilitate additional learning, pediatric
rheumatologists from Vancouver, B.C., Seattle,
WA, Portland, OR, Boise, ID, and Missoua, MT
presented seven case studies for further dialog
on diagnostic and treatment
approaches.
The objective of this
professional medical forum was to extend Cure JM
Foundations partnership with the medical
community to increase awareness of JM. We
hope this forum and future ones will facilitate
greater collaboration with the medical community
to ensure more effective JM treatments and
hasten the development of a cure for this
disease. |
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National Conference:
Hero Awards
by Shari Hume, Cure JM
Co-Founder
At
the Cure JM recognition dinner Friday evening,
we recognized seven individuals who have
generously given of their time and talents over
the past year to help further Cure JMs
mission. These individuals have all done
an outstanding job at increasing awareness of
Cure JM, as well as raising significant funds
for research. Congratulations to the
following people who were selected as Cure JM
Heroes!
Annie
Mitchell with daughter, Grace
Annie
Mitchell works tirelessly to keep all
of us connected through social media. She
started up and maintains our Facebook cause and
other social media sites. Annie is our
representative in Washington DC at events where
she puts a face to Cure JM such as the recent
Bio Conference Networking Project. She has
the passion and ability to communicate and share
her passions with others.
Ragan
Cantrelle and family with Cure JM Secretary
Patti Lawler
Ragan
Cantrelle has been on the Board of
Directors of Cure JM for over 1 year and has
added thoughtful insight and perspective to our
board. She is always there to volunteer
and help. This spring, Ragan ran a golf
outing along with her husband Cord as well as
the Wessel and Gammage families in the New
Orleans area. The Cantrelles put on an
awesome golf event with representation from the
New Orleans Saints and were able to raise almost
$50,000.
Amy
Gleason and daughter Morgan with Cure JM
Chairman Rhonda McKeever and Cure JM Co-founder
Shari Hume
Amy
Gleason decided to run a marathon in
honor of her daughter, Morgan in Jacksonville,
FL. This was no easy feat as Amy described
herself as a couch potato and had to start
from the beginning with her training. More
significantly, Amy was able to bring a face to
juvenile myositis by the media coverage that she
got and by how well-spoken she was on local
TV. In addition, Amy was able to raise
over $8,000 for Cure JM!
Jana
and Bryan Sall and family with Shari Hume, Cure
JM Co-Founder
Jana
and Bryan Sall recently held a
walk-a-thon at their childs preschool and
raised over $5,000! And, this event is
just part of their bigger event called Hike 4 a
Cure. Bryan and 8-12 other hikers will
climb Mount Adams on August 6th. Jana and
Bryan have been planning this event for about a
year and they have done a tremendous job in
creating awareness and raising funds for
research.
Julie
Shevlin and family with Cure JM Co-Founder Shari
Hume
Julie
and Tessa Shevlin entered in a video
contest called Cartwheels for a Cause. The
winner was based on the most votes by the
public, and Julie and Tessas video WON FIRST
PLACE and $5,000. Julie and Tessa
also received $1,000, which they turned around
and donated to Cure JM. In addition to
this, the Shevlin family recruited 50 runners
for Team Tessa to run on behalf of Cure JM in
the Seattle Marathon. They also introduced
a way to get the kids involved with a chart to
mark off their miles walked
.with a goal of
26. Along the way, the kids get special
rewards for their miles, including watching a
movie. As if this wasnt enough, the
Shevlin family held a fundraiser/auction on June
21st at the Space Needle raising over
$30,000!
Lindsay
Cleveland with daughter Janey
Lindsay
Cleveland held a recent fundraiser in
Texas, with many Cure JM families
attending. The JM families shared their
stories through videos, and there was not a dry
eye in the house. There was a silent and
live auction, raising over $32,000
with no
expenses! The crowd went wild during the
auction when a young girl with JM and her sister
modeled two beaded bracelets, selling them for
$1000 to buyers
who then turned around and gave
the bracelets back to the girls as gifts!
Katie
Seibel and family
Katie
Seibel held her 2nd annual Whoopie Pie
fundraiser a month ago, and she sold 1,200
Whoopie Pies raising over $2,500. Last
year, she raised $4,000! Katie was able to
pull-off this successful fundraiser while taking
care of her 5 young children. The
Whoopie Pie fundraiser is truly a family event
as the kids get involved in face painting and
other activities to raise additional funds for
Cure JM. |
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WHAT'S
NEW?
Video Contest to
Win iTune Gift Cards
A
highlight of the conference was a song
and dance performance by the children set to
the tune of Taio Cruzs song Dynamite!
Thank you, Lake Carpenter, for working with the
children on this!
Everyone
was so inspired by the performance, Cure JM is
now challenging all JM families to bring the Cure JM
Dynamite song to life with your own creative
video talents. Cure
JM will select the top 3 picks who will receive
$25 iTune gift cards. Please email
your video to info@curejm.org
either as a youtube link (preferred) or as an
attachment
by August 31, 2011.
To
get you started:
·
Dynamite
music (without vocals).
·
Cure JM Dynamite lyrics are below.
Cure JM
Dynamite Adapted
Lyrics
(Thanks
Conner, Parker, and Cole Hume for writing these
lyrics!)
I
throw my hands up in the air sometimes
Saying
AYO!
Is there a cure, no!
But I wanna
celebrate and live my life
Saying
AYO!
Baby, let's go!
I came to raise,
raise, raise, raise
Funding for a
cure
'Cause I need to fix this phase, phase,
phase, phase
I've been waiting all these
days, days, days, days
Need a cure so I can
play, play, play, play
Ye, ye
Cause it
goes on and on and on
And it goes on and on
and on
Yeah!
I throw my hands up
in the air sometimes
Saying AYO!
Is there
a cure, no!
But wanna celebrate and live my
life
Saying AYO!
Baby, let's
go!
'Cause we gon'a find a cure
If it
takes all night
We gon' light it up
Like
it's dynamite!
'Cause I told you once
Now
I told you twice
We gon' light it up
Like
it's dynamite!
I came to cure, cure,
cure, cure
through all the struggles we
endure, dure, dure, dure
we move together and
have no fear, fear, fear, fear
we are almost
at the point of being clear, clear, clear,
clear
Ye, ye
Cause
it goes on and on and on
And it goes on and
on and on
Yeah!
I
throw my hands up in the air sometimes
Saying
AYO!
Is there a cure, no!
but I wanna
celebrate and live my life
Saying
AYO!
Baby, let's go!
'Cause we gon'
find a cure
If it takes all night
We gon'
light it up
Like it's dynamite!
'Cause I
told you once
Now I told you twice
We gon'
light it up
Like it's dynamite!
We
gonna find a cure,
With all the doctors
here.
Were gonna cure JM and
have no more
tears.
'Cause I, I, I Believe it
And I, I,
I
I just want it gone, I just want it
gone
I'm gonna put my hands in the
air
Hands in the air
Put your hands in the
air
I throw my hands up in the air
sometimes
Saying AYO!
Is there a cure,
no!
But I wanna celebrate and live my
life
Saying AYO!
Baby, let's
go!
'Cause we gon' find a cure
If it
takes all night
We gon' light it up
Like
it's dynamite!
'Cause I told you once
Now
I told you twice
We gon' light it up
Like
its
dynamite! |
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JM MOM Turned
Marathoner
by Erika Bradford
May
12, 2009 my life changed. I found myself
sitting at my two year old's hospital bedside
for hours on end. I began popping M & M's,
and doing other forms of self-destruction just
to cope with the devastating news that my
youngest child has an incurable disease.
Reaching
out to find out everything I could about JM, I
found Cure JM. When I learned about the
2010 Cure JM National Conference being held in
conjunction with the Austin Marathon, I was
struck with inspiration. Here was an
opportunity to raise money and awareness for a
disease that had become near - and not so dear -
to my heart, AND a way to combat the M & M
popping. God's angels sang to me, "Yes,
you can!" I was overcome with
emotion. I ran a little when I was a
teenager, but that's it. I started with
one mile. Then added another. And
another.
Fast
forward to 2011, and a handful of 5k's, 10k's,
half marathons in between, I have just completed
the Seattle RockNRoll Marathon, my second
full marathon with my Cure JM Family.
Running
a marathon is a true soul shifter. It
strengthens your body, and your mind. It
strengthens character. It has giving me
confidence, and has been a great stress relief.
I believe I am able to deal with
everything JM throws at me a whole lot better
because of running.
When
someone asks me why I run, the list is endless.
But I can tell you who is at the top
my
son, along with all the other children fighting
JM.
My
running journey has given me such passion.
In October of 2011, I received my running
coach certification through RRCA (Road Runners
Club of America). While I am still
working on building my experience, I have
learned how to walk a beginning runner through
those first steps.
If
you ever have uttered the words, "I could never
run that far." How do you know?
Have you tried? Check out my running
blog at www.runbcuzucan.blogspot.com.
Feeling serious? My email is roberika2@msn.com. |
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3rd Annual Cure Kids Jam and
Festival in Portland on August
6th
Smedley
family
The
Smedley family is hard at work pulling together
their 3rd annual Cure
Kids Jam and Festival to be held in
Portland on August 6th, The event features
two American Idol artists and up-and-coming West
coast artists (Jessica Lerner, The Graves and
Shelby Marie). The event will raise money
and awareness for The Cure JM Foundation, United
Way, and Ronald McDonald house. There will also
be an auction dinner on August 5th.
Check
out this cool
radio clip for the Cure Kids Jam and
Festival! |
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Interested in Holding Your Own
Fundraiser?
Cure
JM Foundations ability to increase JM
awareness, to provide family support and fund
research to find a cure depends upon fundraising
by you the members of the JM community.
Our goal for 2011 is to raise more than $1
million dollars. This would be most money
Cure JM has raised in a year in its 8-year
existence. Please consider helping us by using
one of the more than 50
fundraising ideas on the Cure JM web
site.
If
you have another fundraising idea you would like
to discuss, contact Cure JM at info@curejm.com
or (760)
487-1079 |
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2012 Cure JM Annual
Conference - Tentative
locations/dates
Cure
JM is still finalizing where we will take our
annual conference next year. Right now,
the top two locations are Baltimore (on/about
October 11th) or Denver (October 6th). We
will finalize once we confirm dates for races
and local partnership with Childrens
Hospital.
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