Cure JM Foundation Newsletter
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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!
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.
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.
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.
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.
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!
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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