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The 9th Cure JM National Educational Conference and Fundraising Event will be January 15-17, 2016 in St. Pete Beach, Florida

Join over 50 other JM families and prominent JM physicians, researchers and patient advocates for the biggest and best Cure JM Family Educational Conference and Fundraising Event yet.  Anyone affected by Juvenile Myositis (JM), including Juvenile Dermatomyositis and Juvenile Polymyositis, is encouraged to attend.

New this yearCure JM is working with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) on special programming to enable JM patients and caregivers to share their perspective on improving JM clinical care and to learn more about getting involved in research.  CARRA is a North American organization with over 400 pediatric rheumatologists and researchers.  Stay tuned for more detailed updates on how patients, families and researchers will be collaborating at the Cure JM Conference in St. Pete Beach.

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Location

 

 The Cure JM National Conference will be at the Sirata Beach Resort in St. Pete Beach, FL.

St. Pete Beach, known as the Sunset Capital of Florida, was named the U.S.'s #1 Family Beach Destination by Trip Advisor magazine.

The Sirata Beach Resort and Conference Center is a scenic getaway with easy access to miles of privately owned white sand beaches and fun for the entire family.

Cure JM has special, discounted hotel room rates.  Based on availability, a Traditional Room is $119, Studio Room $139 and One Bedroom Suites start at $149, per night.  This special rate includes a complimentary Resort Saver Package for each overnight guest room, which includes parking for 1 car and a beach cabana rental (1 per room on a first-come, first-served basis) and is valued at $33. 

To book your hotel room and receive Cure JM's discounted rate, you must call the Sirata Reservations Department at 1-800-344-5999 and identify yourself with the Cure JM Foundation Conference group block.


Schedule

 

Conference activities run from Friday, January 15, through Sunday, January 17.  The schedule is:  

  • Friday afternoon and evening the conference kicks off at 3pm with Early Registration followed by a casual meet-and-greet reception, including complimentary appetizers, light dinner, and social time to connect with other families.
  • Saturday, all participants are invited to attend a General Session with prominent JM researchers and physicians who will give an update on the latest research and answer audience questions.
  • Saturday, family members will participate in small group educational sessions and connect with other families. Sessions will include workshops on Teens Transitioning to Adult Care, Nutrition, and Coping with the JM Diagnosis.
  • Saturday evening will conclude with a recognition dinner and award ceremony to celebrate the collective achievements of the Cure JM community.  A contribution towards dinner is requested, and the event is always fun and inspirational. 
  • Walgreens St. Pete Beach Classic race or volunteer participation on Saturday and/or Sunday.  Cure JM intentionally plans its annual educational conference around a racing event.  We do this for many great reasons.  It allows Cure JM families to raise funds and awareness of JM by running, walking or volunteering in honor of their child/grandchild/relative. By fundraising, YOU will move us closer to a cure for your special child battling JM.  During this time, the JM community mobilizes and is propelled into action. You will develop a strong sense of camaraderie even before you arrive at the conference. (There is no charge for the educational conference, although we highly encourage all families to fundraise at least $250 each).  Our Cure JM team of runners and volunteers will be the biggest group participating in the race events – so our participation will raise great awareness of JM.  And, whether you run, walk or volunteer, your participation helps encourage the importance of a healthy lifestyle, and it's FUN doing this with the new JM families you meet at this event!  All races will conveniently start at the Sirata Beach Resort and the Race Director has generously agreed to donate 30% of all Cure JM runners' registration fees back to Cure JM!  We want to have as many Runners, Walkers and/or Volunteers as possible.  There are many races to consider participating in, Kids Dashes, 5K, 10K and the Half Marathon.  Here’s how to get in on the action:

Race Registration (Run or Walk).  Register here to run or walk in any of the Walgreens St. Pete Beach Classic race events as a part of the Cure JM charity team.  You will be asked during the online registration if you are part of Team Cure JM.  Important note:  three events directly conflict with the Cure JM General Session and Recognition Dinner (the 5pm Beach Fun Run, the party at Rum Runners and the bonfire hosted by the race organizers).  We do hope all our participants take full advantage of our Cure JM events.

Join as a Volunteer on Sunday for the Half Marathon.  Not a runner?  No problem!   You can still get in on the action as part of our Cure JM Volunteer Charity Team on Sunday helping out with the Half Marathon event.  We expect to have several fun assignments such as manning a water station or helping at the finishing area.  When you complete your Cure JM conference registration, indicate you wish to be a race volunteer and we’ll provide more details in January.  Note, you do not need to complete the volunteer registration on the Walgreens Beach Classic website. 

 

Annual Connect Conference



Sessions

 

In the educational sessions, families will get the latest information on Juvenile Myositis diagnosis, treatment and research.  Families will connect and collaborate with other JM families, physicians and researchers.

Sessions will include:

  • General Session including Q&A with Physician Panel and JM research updates
  • What Matters to JM Families: Measures of Quality Care - discussion facilitated by CARRA Researchers
  • Special Session for Newly Diagnosed Families
  • Special Session for Teens and Tweens
  • Teens and Tweens: Transition to Adult Care
  • Coping Skills for JM Families
  • Nutrition for JM kids & their family
  • JM Kids & School Resources – Elementary
  • JM Kids & School Resources – Middle/High School
  • Special Session for Grandparents
  • Special Session for Dads
  • Special Session for Moms
  • Adult supervised Kids' Fun Camp for ages 3-10
  • Teen / Tween Cyber Cafe & Photography Workshop

 


Grandparents

 

Grandparents, and other extended family members who wish to attend, are invited to attend a special session focused on the special role that grandparents play in their families and the JM community.  This session will talk about resources and support for Cure JM grandparents and ways that grandparents can get involved in Cure JM. This session is hosted by the Cure JM Grandparent Network Representatives.


 


Tween / Teen Activities

 

Teens, Tweens and Young-Adults will enjoy their own activities while the adults are in the educational sessions, including:

  • Transition to Adult Care Workshop - Presented by a physician, this workshop will offer practical, real-world guidelines to help prepare teens and tweens to transition into managing their own care. Parents are also invited to attend this session.
  • Hands-on Photography Workshop - Back by popular demand!  Each student will learn the basics of what makes a good photograph and learn about shutter speed, aperture and lenses. We will also learn how to "see" as a professional photographer does, exploring lighting, composition and perspective. With these tools we will explore how photographs can express feelings as well as capturing the beauty all around us. Several professional photographers will be facilitating this session so that each student has a hands-on photography experience.

 


Kids’ Camp

 

One of our most popular attractions is the Kids’ Fun Camp, for children age 3-10. The Kids' Fun Camp is supervised and facilitated by elementary school teachers.  Families can attend the educational sessions while their children enjoy their own fun activities.  This year’s Kids’ Fun Camp will feature a Star Wars Theme. Kids will enjoy a fun-filled day where they will make new friends, have fun and learn a little on the way.

Kids’ Camp activities include:

  • A special visit from Star Wars characters
  • A fun-filled day of activities and games with a Star Wars theme; activities are designed for JM kids and siblings of all ages and abilities
  • A special musical guest who will lead the kids in music activities -- kids will be invited to perform what they have learned for the parents & physicians in the audience
  • A fun, hands-on science experiment using UV-sensitive beads to demonstrate the importance of sunblock
  • A wide variety of crafts, games and fun activities 

 


Now is the time

 

Engaging our JM families, physicians, researchers and patient advocates is critically important to driving greater progress with JM diagnosis, treatments and ultimately a remission or a cure for all JM children and adults.  Within the Cure JM leadership team, we often talk about the importance of JM families taking action to increase the chance for a cure and now is that time!  JM families can gather in an awesome location like St. Pete Beach, FL and participate in the educational and awareness-building events, along with the fundraising efforts.  These efforts will make a difference.  I hope you can join us!  

Learn more about the conference here or contact us at  or (760) 487-1079.

See you there,
Rhonda McKeever
Chairman, Cure JM Foundation

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