Cure JM Foundation Newsletter

 

FEATURED STORY

Participate in Research Study

 

GWU researchers are conducting research on environmental exposures in adult and juvenile dermatomyositis (DM) and polymyositis (PM) patients, to determine whether these exposures contributed to a disease flare.  The study is an anonymous online survey available at:

http://www.surveymonkey.com/s/environmentalexposureandflare

 

To be eligible to take the survey, you will:

·         Need to reside is US or Canada

·         Have an adult or juvenile DM or PM (or are parents of patient)

·         Are at least 1 year from diagnosis

·         Are 2-85 years of age

·         Online survey takes approximately 10-15 minutes

 

For more information, please contact study investigators:
James D. Katz at 202.741.2488 or jkatz@mfa.gwu.edu
Gulnara Mamyrova at 202.741.3069 or gmamyrova@mfa.gwu.edu

 

Cure JM is a sponsor of this study.

 

WHAT'S NEW

National Conference & Fundraiser: June 23rd-25th in Seattle, Washington

 

Our next National Conference and Fundraiser will be in Seattle in conjunction with Seattle’s Rock & Roll Half Marathon and Marathon. The event will kick-off on Thursday, June 23rd with an informal welcome dinner. Friday, June 24th will consist of a variety of breakout sessions and research updates for JM families, as well as a recognition dinner. The conference culminates on the morning of Saturday, June 24th with Seattle’s Rock & Roll Half Marathon and Marathon, where Cure JM supporters will run/walk or volunteer along the race route to raise money to continue JM research.

To participate, please set-up your personal Cure JM fundraising page at: www.firstgiving.com/curejm.

If you are planning on running in either race, you will also need to complete your race registration at: http://seattle.competitor.com/. All runners should complete their race registration ASAP, as we have been advised that the race usually sells out.

 

Click here for flyers, travel details and more information.

 

 

Need a Valentine's Day Gift?  Support Cure JM by Giving Glassybaby's Handmade Glass Votives

 

glassybabys, www.glassybaby.com  are a handmade, glass votive that come in more than a rainbow’s worth of stunning colors.  They are the brainchild of Lee Rhodes, a 3 time cancer survivor. During her own treatment Lee found the light from a glass votive very healing. She eventually learned to make them herself, and now sells them nationally.  A percentage of all glassybaby sales go to helping cancer patients, and now include other causes.

 

During the month of February, glassybaby will donate 10% of all sales to Cure JM if made with the promo code “curejm”.  Sales can be either in-store or online. You will need to enter the promo code “curejm” to make sure we get that donation. 

 

In addition, on February 12th, glassybaby is donating their headquarters in Seattle to two families whose kids have JM, for a glassblowing demonstration, cocktail party and fundraiser for Cure JM.  All ticket sales include a glassybaby and a direct donation to Cure JM.  10%  of sales from any additional glassybabys sold that evening will also go to Cure JM.

 

Help JM Mother Support Cure JM by Buying Pillid - A Neat Solution for Managing Meds

In 2006, Jennie Mejia was presented with news that no parent wants to hear: her daughter Ingrid was diagnosed with JM. Countless hours in hospital waiting rooms became countless hours of thinking and talking about life, and how to best live it.  Ingrid’s determination, tenacity and strength kicked in.  She made a conscious choice to transcend the diagnosis, and live the life she dreams of anyway.  Meanwhile, Jennie began researching and re-organizing their new normal.

 

But the new normal includes medications - a lot of medications.  And vitamins.  And supplements.  Ingrid’s pill regimen is complicated, and must be followed with meticulous care.  Jennie tried numerous methods of organizing Ingrid’s pills, and the one that worked best was to tape the pills to the side of her water bottle.  With pills and water close at hand, Ingrid could be free to dream, to dance, to grow - all while remembering to take her pills at the correct times. 

 

But Jennie wanted a better solution.  While performing the daily ritual of preparing medications, the simple solution appeared: keep all the pills safe, dry and available, not ON the water bottle, but INSIDE the lid.

 

Her idea was born.  Pills + Lid = Pillid!  Pillid® was born out of Jennie’s love for her daughter and her desire to create a life of hope and freedom for her.  Jennie has built a company to create and market her product, and after much hard work, Pillid is available for everyone.  She hopes Pillid will help make people's lives a little easier on their journey to good health.  She also hopes her work will raise awareness and funds towards research that will cure all autoimmune disease.  Visit http://thepillid.com.

 

Children's Fashion Show Raises $4K for Cure JM

 

Special thanks to Suzy Clement for writing this story.

 

Organizer Amanda, standing on left; Speaker Erin, kneeling on right

 

When 19-year-old Amanda Alexander saw the way juvenile dermatomyositis impacted her young cousin Kassidy (age 4), she couldn’t stand by and simply watch.  “This disease is so terrible and causes so much suffering, and yet nobody knows about it,” she says.  “It made me want to learn more, and do something to help.”  Once she found Cure JM and its mission to support families, raise awareness, and fund research for a cure, her desire to do something for her little cousin came into focus.

 

Amanda, a college student studying to be a nurse, had the idea to hold a children’s fashion show as a fundraiser in her hometown of Queens, New York.  Her plan was to approach clothing designers and ask them to donate items to be modeled by JM kids, as well as other children in her family and community.  The only problem?  The designers weren’t exactly forthcoming with donations.  So Amanda and another cousin, design student Chrisillar Garcia took matters into their own hands - they designed and sewed the clothes themselves.

 

Through her church, Amanda secured a space to hold the event, and publicized it in her community.  Two area JM families traveled to participate (Brooke Kimball with her daughter Brookelyn, and Erin Duval with her son Dmitri).  Along with the fashion show, Kassidy’s mother Kari Belfon spoke about her family’s struggles with JM, and there were musical guests as well as an uplifting performance by the Healing Hands of God Sign Language Group, an all-ages group that signs the words to gospel songs - while dancing like nobody’s business.  Once the crowd was thoroughly warmed up, another JM mom Erin Duval spoke about the horrors this disease inflicts on the children, and families, that it touches.  “I have never been around such a caring, emotional group of people, who opened their arms to total strangers in the way they did for us,” says Erin.  “It was so much more than I ever expected when we were asked to attend the fashion show.”  

 

JM Children Who Attended Fashion Show

 

Finally, Amanda showed the Cure JM fundraising video before the kids took their final walk down the runway.  “It really had an impact on the whole event,” Amanda says of the video.  “It showed just what is taking place, and how vital it is to fund a cure.  After people saw it, they really wanted to support us.”

 

Between the event itself and outreach to her family and friends, Amanda raised nearly $4,000 - such a fantastic achievement!  And what was the biggest surprise for Amanda?  “People were actually thanking ME -- for letting them know about this, and giving them the opportunity to help.  It was a cool experience, and so much fun!  I look forward to doing more to benefit Cure JM!”