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“IT GETS BETTER”
WORDS OF ENCOURAGEMENT FROM CURE JM TEEN MAGGIE
Written by Maggie F., age 16.
Maggie wanted to share some words of encouragement with other kids, so parents may share this with their kids if desired.
Hello, I am Maggie. I was diagnosed with JDM (Juvenile Dermatomyositis) when I was two years old. It had gone into remission for a while, but the JDM just recently returned. I have been very fortunate to have amazing doctors and nurses who have helped me every step of the way. I am very blessed, most children don’t get that opportunity.
If I were to offer advice to people who are going through the exact same thing that I am, I would tell them to not lose hope. It will be hard for a while but eventually there will be improvement. At the beginning, when I found out that it was back, I remember feeling like this was such a burden and completely unfair. I even had to sacrifice cheering for a while, which is what I love to do the most. I didn't understand why it felt like all the things that were bad would happen to me. I looked at it as embarrassing and was very ashamed of it. When someone asked me, what was wrong or how I was doing, I always dreaded telling them the truth. But now I have learned it is nothing to be ashamed of. There are many other kids like me. I am not alone.
I have become much better and have improved tremendously. It is still hard at times but it gets better.
We at Cure JM are so happy for the improvements that Maggie has experienced and wish her well in her ongoing journey with JM. We hope that our other families may also experience such success with continued improvements.
Click here for additional information on teens with JM.
REMEMBER: MYOSITIS & YOU BOOK AVAILABLE
The book Myositis and You is available from Amazon in both hard copy and eBook. Funded in part by Cure JM, the comprehensive guide features over 450 pages with contributions from over 80 experts and medical professionals. Learn more and purchase a hard copy or eBook at: curejm.org/book.
ZACK HARRISON RECEIVES COMMUNITY AWARD FOR HIS VOLUNTEER WORK WITH CURE JM
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Cure JM dad Zack Harrison with his family. Zack and his wife Sandi are Vice Presidents of Cure JM's Ohio/Pittsburgh Chapter
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Zack and Sandi Harrison were shocked when their three-year-old daughter Sydney was diagnosed with Juvenile Dermatomyositis (JDM) in 2015. But they soon discovered hope and community in the midst of coping with a chronic disease in their family.
To help with coping with this news, Zack and Sandi decided that they wanted to make a difference by raising funds for research.
“Research is hope,” says Zack. “As a parent you just want to make things better for your child and we feel honored that we can be a small part of all the families working toward a cure.”
And in just two short years, the Harrisons have made a big difference. They have held many fundraisers in collaboration with their local Lions Club, have participated on Cure JM’s team in the Holiday Challenge, and are active members of the Ohio/Pittsburgh Chapter of Cure JM. In all, the Harrisons have raised over $10,000 for JM research.
And we are very excited to announce that Zack was recently honored with the Barc Simpson Community Hero Award in Columbus, Ohio for his work with Cure JM.
“Congratulations to Zack and Sandi and their family for their extraordinary work in their local community,” says Cure JM Executive Director, Jim Minow. “Cure JM’s research program is made possible largely through grassroots fundraisers like these and winning this award is a wonderful achievement.”
UPCOMING NATIONAL FAMILY CONFERENCE SPOTLIGHT:
Saturday’s General Session
Cure JM’s 12th Annual National Family Conference is scheduled for June 29 through July 1 this year in Arlington, VA just outside of Washington D.C.
One of our most popular and informative sessions will be the General Session on Saturday morning. This session will include insights and updates from the top JM researchers. This session will also review what Cure JM Foundation is doing to improve the lives of families battling JM, from the latest research being funded to advancing new Centers of Excellence in JM Research to build awareness of JM.
General Session Speakers are:
Jim Minow
Executive Director, Cure JM
Lisa G. Rider, MD
Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health, and Chairman, Cure JM Medical Advisory Board, National Institute of Environmental Health Sciences, National Institutes of Health
Lauren M. Pachman, MD
Professor of Pediatrics, Northwestern University Feinberg School of Medicine
Ann M. Reed, MD
Chair of the Department of Pediatrics, Duke University School of Medicine
Susan Kim, MD, MMSc
Associate Professor, Associate Clinical Professor of Pediatrics, University of California, San Francisco Department of Pediatrics
Charlly Kao, PhD
Senior Scientist, Center for Applied Genomics, The Children’s Hospital of Philadelphia
Kanneboyina Nagaraju, DVM, MVSc, PhD
Founding Chair and Professor, Pharmaceutical Sciences, Binghamton University, State University of New York
Plan now to attend. For additional information,CLICK HERE TO VISIT THE CONFERENCE WEBSITE or for questions contact conference@curejm.org
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 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 Saturday, 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.
- Sip, Dip, & Bid for a Cure
Friday, March 2nd, White Plains, NY
Contact Nikki Hahn at nikki.hahn@curejm.org to learn more.
- Crawfish Feed Sponsored by the Louisiana Chapter of Cure JM and Crawfish Cookin' for a Cause
Saturday, April 28, Mandeville, Louisiana
Purchase tickets at www.crawfishcookinforacause.com/ or contact Louisiana Chapter President Ragan Cantrelle at ragan.cantrelle@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
- 5th Annual Cowboy Brad Concert for Cure JM
Saturday, July 21, Estes Park, CO
RSVP or info contact 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. |
