Cure JM Foundation Newsletter

FEATURED STORY

Registration Open for Annual Conference and Fundraiser 7/19-7/21 in Chicago

 

 

Cure JM invites all JM families to participate in our annual Conference and Fundraiser which will be held on July 19th-21st, 2013 in Chicago in conjunction with the XSport Fitness Rock 'n' Roll Chicago Half Marathon and Mini Marathon. 

 

As anyone who has attended past Cure JM conferences will tell you, this is a very special event not to be missed. 

 

Meet and learn from other families who understand how a JM diagnosis changes everything.  Hear from JM experts on our Medical Advisory Committee about the latest research and have the opportunity to ask them questions.  Feel empowered by fundraising for a cure when you participate in the Half Marathon (13.1 miles), Mini Marathon (3 miles), serve as a volunteer at our Cure JM water station, or even serve as a virtual volunteer from home.

 

The conference will take place at the Radisson Blu Aqua Hotel, conveniently located near the race.  Cure JM has secured a discounted group rate of $209 per night.  A link for making hotel reservations will be up later this week on our Cure JM registration page.

 

For more details and to register for the conference, visit http://www.curejm.org/chicago/

 

A special invitation to grandparents

We know how much emotional support grandparents provide for JM children and their parents, and we feel that learning more about JM and connecting with other grandparents at the conference would be invaluable. 

 

If any grandparents would like to help us encourage other grandparents to attend and/or help organize a break-out session for grandparents, please contact info@curejm.org.

 

Take 10 Seconds TODAY to Help Us Win $6K

 

 

Last year, the Cure JM community helped Julie Shevlin and her daughter Tessa win $6000 for Cure JM in the Cartwheel for a Cause voting contest.  Let's do it again!

 

Go to http://www.veritymom.com/2013-cartwheel-for-a-cause/.  On the left, enter your name, email address, vote for #3 Julie Shevlin, and click the vote button to submit.

 

Voting closes today Monday 3/11 at 8pm EST!

 

Participate in Research Study on Psychological Impact of JM on Parents

 

Samantha Kountz-Edwards,

holding a picture of a friend she lost to JM

 

Researchers from Palo Alto University are seeking volunteers to study how caring for a child with JM impacts family functioning and parental psychological health.  The project is being led by Samantha Kountz-Edwards, a doctoral student who lost a dear friend to JM. 

 

Who can participate?  Parents of children aged 1 month-18 years old diagnosed with JM.  The identity of patients and family members will remain confidential.

 

Why should I participate?  This study may act as an incentive for state and national funding of JM.  The findings may also help to develop recommendations specific to improving the quality of care provided to patients with JM and their families.

 

What is the time commitment?  Just 2 hours to complete forms and do a short phone interview.

 

What is the deadline?  Register by March 31st for your input to be included in a presentation to the American Psychological Association this August.  (You may still register after March 31st, and your data will be included in subsequent analysis.)

 

How do I register?  Email Samantha at PaloAltoUniversityJDMstudy@gmail.com with your child's name, age, and your mailing address or call 408-753-6096.

 

For more details, visit: http://www.curejm.org/research/psych_impact.php

 

If you are interested in volunteering for other JM research, visit:

http://curejm.org/research/research_volunteers.php

 

ParentWISE Program Wins HAVE Award

 

Cure JM Board Member Jacque DenUyl and Cure JM Medical Advisory Committee Member, Dr. Lauren Pachman 

 

The ParentWISE (Parent Wisdom in Shared Experience) volunteer program at Ann & Robert H. Lurie Children's Hospital of Chicago has been awarded a 2013 Hospital Award for Volunteer Excellence by the American Hospital Association. ParentWISE, which will celebrate its 25th Anniversary in May, has been recognized in the In-Service Hospital Volunteer program category. This national award will be presented at the AHA's Annual meeting in April.

 

ParentWISE volunteers are specially trained parents who connect with, empower, and support parents and families around the common bond of their child's illness or condition. The program was started by parents in Oncology and was gradually expanded into other inpatient units.

 

Cure JM board member Jacque DenUyl is a ParentWISE volunteer in Dr. Lauren Pachman's Rheumatology clinic at Lurie Children's. Dr. Pachman was an early advocate of parent to parent contact in the outpatient setting, and Jacque recently passed her six year anniversary as a ParentWISE volunteer in that clinic. Cure JM has supported Dr. Pachman's Cure JM Program of Excellence in Juvenile Myositis Research for the past eight years. Congratulations to Jacque, Dr. Pachman, ParentWISE, and Lurie Children's for their commitment to family

 

Lexus of Portland's Drive for Charity Program Selects Cure JM Foundation

 

 

Lexus of Portland held a voting contest to select four charities for their Drive for Charity Sales event, and the Cure JM community once again pulled together to help Cure JM win! 

 

During the Drive for Charity Sales event on 3/11/13 - 3/17/13, $200 will be donated for each sold vehicle to one of the four charities, as chosen by the buyer.  In addition to the opportunity to raise funds for a cure, we are thrilled by the enthusiasm and awareness this contest has generated. 

 

Special recognition to the Smedley family for finding this opportunity in their community and leading the charge.

 

And huge thanks to one of our 2012 Cure JM Heroes, Pauline Lenz aka Ninja Nana, who begged all her friends to vote with the promise that she would post a video of herself doing the chicken dance if we won. 

 

Ninja Nana will do ANYTHING to help our kids!  Just watch.

https://www.youtube.com/watch?v=_Rj5dS0zmbI

 

 

Shanghai Family Zumbathon Raises Over $8,700 for Cure JM

Tessa Larsen

 

In January 2012, when Laurel Larsen was teaching Zumba in her daughter Tessa's preschool in Shanghai, she noticed Tessa (then aged 5) was having trouble raising her arms above her head.  As Tessa's condition deteriorated, her family took her back to doctors in the U.S. and Singapore looking for answers, and on March 31, 2012, she was diagnosed with JM.

 

One year later, Tessa has regained her strength, and her family has chosen to take action by organizing their first annual Shanghai Family Zumbathon which was held on January 19th benefiting Cure JM.  This 2 hour family Zumba event and raffle was a huge success with 6 Zumba instructors including Laurel Larsen helping to raise over $8,700 for Cure JM.

 

Watch highlights from this fun event: http://www.youtube.com/watch?v=KY3NW1S3T00

 

Intererested in Organizing A Fundraiser?

 

Funding research for a rare disease like JM depends on families that are affected to get involved and to rally their friends, extended families, and communities together to support the cause. 

 

We are inspired by the growing number of events and fundraisers put together by our JM families: http://www.curejm.org/news/events.php.

 

If you wish to organize your own fundraiser, check out the four steps to starting your own fundraiser on the Cure JM website:  http://www.curejm.org/teamjm/four_steps.php?id=involved