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PATIENTS URGENTLY NEEDED
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 are 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
Learn more here.
Click here for a complete list of research studies needing volunteers
THANK YOU!
Thank you! Together Cure JM families and friends raised and won over $900,000 for Juvenile Myositis research and programs in the year-end fundraiser known as the Holiday Challenge, which includes Giving Tuesday. Your exceptional support during this event will provide crucial funding to advance Juvenile Myositis Research and Programs in 2018.
Click here to read more about the current research that you are making possible. More details will also be coming in the Cure JM Impact Report this spring.
Thank you again! Thanks to your generosity we look forward to 2018 with great hope and optimism.
CURE JM FOUNDATION NATIONAL FAMILY CONFERENCE:
FRIDAY, JUNE 29TH - SUNDAY, JULY 1ST, 2018 IN WASHINGTON, D.C.
CONFERENCE BEGINS FRIDAY, JUNE 29 AT 1PM!!!
The 12th Annual Cure JM National Family Conference and Walk Strong to Cure JM will be Friday, June 29th - Sunday, July 1st, 2018 in Washington, D.C.
Join over 100 other Cure JM families and prominent JM researchers for a spirited weekend of sharing and connecting with families, physicians, and researchers. Families will also learn about the latest in Juvenile Myositis research and treatments. Learn more about the conference at www.curejm.org/conference
Conference registration opens next month. We highly recommend booking your hotel now as the hotel will be sold out the weekend of the conference.
All conference activities will be held at the Key Bridge Marriott, 1401 Lee Hwy, Arlington, VA 22209. We have a special group rate of $119 per night plus taxes/fees (parking is free for our group). Use the below button to book your hotel rooms at the Cure JM group rate.
Please use the link below to book your hotel rooms at the $119 rate for Thursday, Friday, and/or Saturday night. If you require additional nights at the hotel, please book the nights you can online then call the hotel and ask them to add additional nights to your stay (additional nights cannot be booked online).
What is the Cure JM National Conference? Click here to view the recaps and video presentations from past conferences.
For those making your travel plans, note that the conference will run from Friday, June 29, at 1PM until Sunday, July 1, at 11AM.
THE BLESSINGS OF BEING ONE IN A MILLION
Written by guest contributor Lindsay Hausch, Cure JM Mom
My daughter is one in a million..
She was diagnosed with a rare disease called Juvenile Dermatomyositis at 18 months old.
“You could probably count on your hand the number of kids under two years old that have been diagnosed with JM (Juvenile Myositis) in the last ten years,” one of her doctors said as he wrung his own hands.
Most who have a rare disease would probably agree that it is hard to be one in a million. But what about the good that comes out of it too?
For my family, 2017 felt heavy as we grieved this new diagnosis, but in 2018, we want to find the opportunities that come with being one in a million.
So, we will start the year off right with a list of the five opportunities that come with my daughter's rare disease:
- People come to me when they’re struggling. In the last six months, so many of our friends have faced difficult things like cancer, job loss, chronic illness, and loss of loved ones. They see me as someone who has walked this unmarked road of struggle. They have come to me with their pain and uncertainty, and shared their uncensored stories. I know the vulnerability it takes to be honest and real in those hurting places, and I feel so blessed that they feel safe to let me hold their hearts and their hands even when their life is messy and complicated.
- We have two new families. I waited in the clustered line at the pharmacy inside our local hospital. I overheard a mom in front of me talking about her son’s infusion, “Do you go to OPI?” I asked referring to the hospital’s outpatient infusion center. “Yes! You too?” she responded smiling warmly. “Every month,” I said pointing to my two-year-old. “Well then, we’re family, sister!” Her skin was dark chocolate, mine, white as milk, but we were family, forged by needles, and IV’s, tears, and a clenched fist hope. We have family at our infusion center as we fight the evil of disease together. We have family dotted across the country fighting JM together.
- We get to be a spokesperson for her disease. I started writing for The Mighty after my daughter’s JM diagnosis. My family also became involved with Cure JM, and this year with 300 other JM families, we raised over $900,000 dollars for JM research. Because of the IVIG blood infusions my daughter receives each month, we have dozens of friends and family that donate blood regularly because they see the impact it’s having on our little girl’s life.
- We know what being rare feels like. When you’re one in a million for a rare disease, you can feel like the unlucky one. But when we see all the ways we have grown, all the things we have learned, and the strength, compassion, and determination of our little girl—one in a million feels like maybe we’ve been chosen for a special purpose.
- We appreciate the good days. When my daughter runs, or twirls, or plays, when she has a day that’s free of pain and filled with laughter, we feel grateful. I’m grateful that being one in a million means we don’t take these precious days for granted.
What are the blessings that have come with your child’s diagnosis? I hope 2018 presents more opportunities that come out of your family's struggle with JM. We want to celebrate with you. Join us by listing your blessings on social media with the hashtag, #curejm.
UPCOMING
WALK STRONG TO CURE JM™ EVENTS
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 a walk.
- Inaugural Florida Walk, 2/10/18, Bill Frederick Park at Turkey Lake, Orlando, FL
LEARN MORE OR REGISTER HERE
- Inaugural Ohio/Western Pennsylvania Walk, 4/21/18, Schenley Park, Pittsburgh, PA
LEARN MORE OR REGISTER HERE
- Inaugural Northern California Walk, 4/28/18, Lake Merritt, Oakland, CA
LEARN MORE OR REGISTER HERE
- 2nd Annual Chicago Walk, 5/6/18, St. James Farm Forest Preserve, Warrenville, IL
LEARN MORE OR REGISTER HERE
- Inaugural Minnesota Walk, 5/19/18, University of Minnesota, Minneapolis, MN
LEARN MORE OR REGISTER HERE
- 3rd Annual Seattle Walk, 10/6/18, Marymoor Park, Redmond, WA
LEARN MORE OR REGISTER HERE
UPCOMING EVENTS
Visit www.curejm.org/events or follow us on social media for additional updates.
- Sip, Dip, & Bid for a Cure
Friday, March 2nd
Coliseum Night Club
White Plains, NY
Join us or a night out with dinner and a live auction to benefit Cure JM Foundation. Contact Nikki Hahn at nikki.hahn@curejm.org to learn more.
- Cure JM Foundation 12th Annual National Family Conference
Friday, June 29th at 1:00pm - Sunday, July 1st
Key Bridge Marriott
1401 Lee Hwy Arlington, VA 22209
(Washington, D.C. Metro Area)
Join us for
- Presentations on the latest JM research and treatments by the JM Medical Community
- Workshops for Caregivers
- Breakout sessions for Moms, Dads, Newly Diagnosed Families, Grandparents and Extended Family Members
- Special sessions and activities for tweens, teens and young adults
- Kids Fun Camp
- Washington, D.C. Walk Strong to Cure JMTM 2018 National Fundraising Event
CLICK HERE TO VISIT THE CONFERENCE WEBSITE
For questions contact conference@curejm.org
- 5th Annual Cowboy Brad Concert for Cure JM
Saturday, July 21, Festivities begin at 4:00pm
YMCA of the Rockies, Hyde Chapel 2515 Tunnel Road Estes Park, CO
At 4:00 pm, families will meet in the shady picnic area at the Hyde Chapel for a picnic, social time, and yard games including gaga ball and washers. The family-friendly concert will be from 7:00 pm-8:00 pm. RSVP to laurel.krider@curejm.org
Do you have a story you would like to share? Send to Darlene Fritsche at enews@curejm.org for a future edition of YOUR newsletters. |
