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Cure JM Foundation Newsletter

Cure JM Newsletter

September, 2016

•

Educating Physicians about Juvenile Myositis

•

Join us and Walk Strong to Cure JM

•

Volunteer for a Clinical Trial

•

Honoring Mason

•

National Conference - Register Now

EDUCATING PHYSICIANS ABOUT JUVENILE MYOSITIS

Dr. Curran

Dr. Megan Curran, M.D. is an Attending Physician, Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago; an Assistant Professor, Northwestern University Feinberg School of Medicine; and a Program Director, Northwestern/McGaw Pediatric Rheumatology Fellowship Program.

Thanks to the support of the Cure JM community, Cure JM was able to help fund a project to educate physicians about the signs and symptoms of JM.

With funding from Cure JM, Dr. Megan Curran sent an E-newsletter to 10,000 pediatricians. The purpose of the newsletter was to help educate the pediatricians about JM so they can diagnose JM accurately and quickly. The pediatricians receive CME credit (Continuing Medical Education) for reading it and taking a short test afterwards. CME credits are required in most states for physicians to keep their medical licenses.

Many of the photos in the E-newsletter were provided by Cure JM families.  Here’s the link to the online CME course that your support made possible.  


JOIN US AND WALK STRONG TO CURE JM

Walk Strong to Cure JM Logo

Walk Strong to Cure JM events are coming up in Seattle, WA, Austin, TX, Chicago, IL, Long Island, NY, and Washington, D.C.

Cure JM is excited to announce the first five “Walk Strong to Cure JM” family fundraising walks.

Come out and join us at a walk near you!

And forward this to all of your friends & family in the area of a walk.

Each walk will feature fun, entertainment, food, and a family-friendly fundraising walk. 

To learn more or register for a walk contact your local walk leader or walks@curejm.org.

UPCOMING “WALK STRONG TO CURE JM” EVENTS:

SEATTLE, WA - 10/8/16. Contact jana.sall@curejm.org.  

AUSTIN, TX - 2/19/17.  Contact april.duley@curejm.org.

CHICAGO, IL - May 2017.  Contact jennifer.coe@curejm.org.  

LONG ISLAND, NY - May 2017.  Contact tracy.vanness@curejm.org.  

WASHINGTON, D.C. - May 2017.  Contact simonetta.donofrio@curejm.org.


VOLUNTEER FOR A CLINICAL TRIAL

MicroscopeBecome one of the people who turn promising ideas into proven therapies that change lives!

You can make an impact and contribute to the development of new therapies for Juvenile Dermatomyositis by participating in a clinical trial. We are excited to let you know about a number of experimental treatment studies that are currently enrolling patients with a diagnosis of either Juvenile Dermatomyositis or the adult form of Dermatomyositis.

Experimental Treatment Study: H.P. Acthar Gel (Cure JM Foundation)

We are currently enrolling patients with Juvenile Dermatomyositis (JDM) who are 18 years of age and older, as well as patients with the adult form of Dermatomyositis. Study participants must have refractory cutaneous symptoms, meaning that skin manifestations (calcinosis, rash, etc.) do not respond to treatment of steroids plus one other medication, such as methotrexate or IVIG. The Principal Investigator is Anthony Fernandez, MD, PhD at the Cleveland Clinic. For more information on the study, go to: clinicaltrials.gov/ ct2/ show/ NCT02245841.

To enroll or for more details, contact Lisa Rittwage, BSN, RN, at (216) 444-4659 or rittwal@ccf.org.

 

AID Clinical Trial: Abatacept In Juvenile Dermatomyositis

The Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 8 years old. Study participants must have moderately active disease despite treatment with prednisone and at least one other medication. Travel funds and compensation is available for study participants for five study visits after screening. Talk to your doctor about this trial or print out the materials below and show them to your doctor.  Your doctor can enroll you or get more information by contacting Sirlekar Bullocks at sbullocks@mfa.gwu.edu or call (202) 750-0377.

More Information


SMEDLEY FAMILY HONORS MASON

The Smedley Family

The Smedley Family at Cure JM’s National Conference and Family Fundraising event in Seattle, WA in 2011.

The Smedley family held their annual fundraising event for Cure JM Foundation in memory of their son, Mason in June in Portland, Oregon.

"Mason showed us all the true meaning of courage as he fought Juvenile Dermatomyositis with extraordinary strength, resilience, and always, with a great sense of humor," says Cure JM co-founder Shari Hume.

Through their recent dinner and auction the Smedley family raised $63,000 so far, and would like to reach $70,000. Let's help them reach their goal in loving memory of Mason.

CLICK TO SEE THIS HEARTWARMING VIDEO CELEBRATING MASON -- and please make a gift to Cure JM in honor of Mason.


NEW PROGRAMMING AT THE CURE JM NATIONAL CONFERENCE

Lakeway Resort Pool Complex Aerial View

The Cure JM National Conference and Family Fundraising Event will be at the Lakeway Resort and Spa in Austin, Texas, February 17-19, 2017.

Cure JM is excited to offer NEW programming at the 2017 #CureJM National Conference and Family Fundraising Event! www.curejm.org/austin

In addition to our popular break-out sessions, new sessions will include:

 

NEW! Patient Advocacy - Navigating School, Insurance companies, and Healthcare Providers

NEW! How to talk to your doctor

NEW! Ways to Manage Sun Exposure

NEW! Teen and Child Perspective: A Q&A for Parents Led by Teens

NEW! Drug Trials: A summary of current drug trials underway

NEW! Understanding Labs, Treatments and Side Effects: Ask the Doctors?

NEW! Helping Your Kids Cope

NEW! Mindfulness for Stress Reduction

NEW! Yoga for Stress Reduction

 

Join over 100 Cure JM Families February 17-19, 2017 in Austin, Texas for the Cure JM National Conference and Family Fundraising Event at the Lakeway Resort and Spa.

For full conference schedule, hotel, and information visit www.curejm.org/austin. Contact conference@curejm.org with any questions.

REGISTER NOW
 

 

Cure JM Logo

 

 

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