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Cure JM Foundation eNews

Cure JM eNews

April, 2018

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Cure JM Kid Competes on Masterchef Junior

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Get Ready for the Family Conference

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Biking for a Cure

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Patients Urgently Needed for Drug Trial

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Walk Strong™

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Upcoming Events

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CURE JM KID MARIA COMPETES ON MASTERCHEF JUNIOR REALITY TV SHOW

Maria in Chef's Apron

Cure JM Kid Maria, age 8, is competing on the Master Chef Junior, a reality TV show on Fox. The show is judged by a panel of world-renowned chefs including Gordon Ramsay.

Maria's signature dish is Pork Chops with Fried Plantains, Rice and Beans and as of this publication, Maria had made it to the final 12 out of 40 contestants.

“Pursuing her passion for cooking and acting helps Maria cope with her disease” says Maria's mom Omyra. “We are so overwhelmed and thankful by the support and love that we have received from our Cure JM family. We cry and smile as we see all the posts on social media that Maria is inspiring other Cure JM kids to cook! It is so awesome!”

On the show, Maria will compete against other kids in a series of cooking challenges. The winner of the competition will receive $100,000.

“If I could say anything to the other Cure JM Kids I would tell them to follow their dreams,” says Maria. “Never give up.”

Watch Maria compete Friday nights on MasterChef Junior on Fox.


12th ANNUAL NATIONAL FAMILY CONFERENCE

Special Session for Moms

Spaces to attend the conference are going quickly! We expect the conference and hotel rooms to sell-out so please book your rooms and register for the conference at your earliest convenience. For a link to book your hotel room and to register please visit www.curejm.org/conference.

What do photography, kids' camp, breakout sessions and forming life-long friendships have in common?  These are the things that Cure JM children, teens & tweens will experience at the upcoming 12th Annual Family Conference in the Washington, DC area, including: 

  • Toddler and Small Children Activities (3-6 years) - Kids' Fun Camp
  • Kids Room Activities (7-13 years) - Kids' Fun Camp
  • Teens & Young Adults: Support and Self Advocating

Learn more and view the full agenda here.

Cure JM’s National Family Conference is Friday, June 29th, through Sunday, July 1st, at the Key Bridge Marriott in Alexandra, VA. Cost to attend the conference is $100.00 per adult and children may attend at no charge.


DAVE MAHER RIDES FOR A CURE

Dave on Bicycle

Cure JM dad Dave Maher recently rode his bike 1,000 miles to raise funds to Cure for JM in honor of his daughter Kadie, who was diagnosed with Juvenile Dermatomyositis at the age of six.

“Our family has always really admired Cure JM's commitment to finding a cure and appreciated the strong and supportive community the organization provides,” says Kadie, now 26 years old.

The Maher family received donations from friends, family, and businesses and raised over $15,000 for Cure JM’s research program.

“We were overwhelmed and so grateful to all our friends, family, and community that supported our efforts in honor of Kadie,” says Dave. “And the riding went very well -- only one flat tire to report!”

Thank you, Dave, Kathy, Kadie and the entire Maher family for their exceptional efforts to make a difference.


PATIENTS URGENTLY NEEDED FOR DRUG TRIAL

Girls holdiing "Research=Hope" sign

Help advance Juvenile Myositis research by volunteering for this drug trial.

The Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 7 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 you can get more information by contacting Sirlekar Bullocks at sbullocks@mfa.gwu.edu or call (202) 750-0377

Click here for a complete list of research studies needing volunteers


UPCOMING WALK STRONG TO CURE JM™ EVENTS

Dads at Austin Walk

Cure JM is excited to announce more Walk Strong to Cure JM™ family fundraising walks. Come out and join us at a walk near you! Each walk will feature fun, entertainment, food, and a family-friendly fundraising walk. Forward this invitation to your friends & family in the area of the walk or event.

  • Inaugural Ohio-Western Pennsylvania Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, April 21, Pittsburgh, PA
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact lauren.alvord@curejm.org
  • Inaugural Northern California Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, April 28, Oakland CA
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact lauren.alvord@curejm.org
  • 2nd Annual Chicago Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, May 6, Warrenville, IL
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact walks@curejm.org
  • Inaugural Minnesota Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, May 19, Minneapolis, MN
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact lauren.alvord@curejm.org
  • 2nd Annual Washington, D.C. Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, July 1, Arlington, VA 22209
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact lauren.alvord@curejm.org
  • 2nd Annual Massachusetts Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, September 30
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact melissa.corey@curejm.org
  • 3rd Annual Seattle Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, October 6, Redmond, WA
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact shannon.malloy@curejm.org
  • 2nd Annual New York Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Sunday, October 2018,
    CLICK HERE TO REGISTER OR LEARN MORE
    Contact tracy.vanness@curejm.org
  • Inaugural Houston Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk Saturday, February 9, 2019
    Contact melissa.shelby@curejm.org

UPCOMING EVENTS

Join fellow Cure JM families and supporters at an upcoming event near you.

  • 2nd Annual Dallas Chapter Family Educational & Social Event
    Saturday, April 21st, Dallas, TX
    Contact: john.kara@curejm.org to learn more.
  • 2nd Annual Central Texas Chapter Family Educational & Social Event
    Sunday, April 22nd, Dell Children's Medical Center Signe Auditorium
    4900 Mueller Blvd. Austin, TX 78723
    Contact sissy.taylor@curejm.org.
  • 2nd Annual Cure JM Family Educational Event Presented by the Pacific Northwest Chapter of Cure JM
    Saturday, May 19, Seattle, WA 98105
    Contact suzanne.edison@curejm.org.
  • Massachusetts Chapter Golf Tournament 2018
    Monday, May 21, Halifax, MA 02338
    CLICK HERE TO PURCHASE TICKETS OR SPONSORSHIP OPPORTUNITIES or contact Cure JM Massachusetts Chapter President Chris Bokis at (508) 735-0966 or chris.bokis@curejm.org.
    VIEW/PRINT A FLYER
  • Cure JM Foundation 12th Annual National Family Conference
    June 29th - July 1st, Arlington, VA 22209 (Washington, D.C. Metro Area)
    CLICK HERE TO VISIT THE CONFERENCE WEBSITE
    For questions contact conference@curejm.org
  • Inaugural Cure JM Family Educational Event Presented by the Houston Chapter of Cure JM
    Saturday, July 7, Houston, TX
    RSVP to: bud.sheffield@curejm.org to learn more.
  • 5th Annual Cowboy Brad Concert for Cure JM
    Saturday, July 21, Estes Park, CO
    RSVP or info contact laurel.krider@curejm.org
  • Evening Under the Stars
    Saturday, August 4th, Warsaw, IN
    Contact: kristine.alderfer@curejm.org
  • Christmas Shop for Cure JM
    Saturday, Nov 3, Warsaw, IN
    Contact: kristine.alderfer@curejm.org.

Do you have a story you would like to share? Send to Darlene Fritsche at enews@curejm.org.

 

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