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2018 CURE JM FOUNDATION NATIONAL CONFERENCE AND FUNDRAISER RECAP COMING NEXT MONTH

Thanks to our families and researchers, the 12th annual conference was a resounding success. We hosted 90 families - including 40 grandparents, 50 teens, over a dozen young adults, 70 children, and over 150 parents. Our medical conference welcomed 90 medical professionals.

Next month, we’ll bring you a complete recap of the meeting, including detailed session reviews, research updates, and plenty of videos and photos.

In the meantime, block your calendar for June 21-23, 2019. We’ll host our 13th annual conference in Chicago. We hope you can join us.

UPDATE ON A DRUG TRIAL FOR ADULT DERMATOMYOSITIS

Idera Pharmaceuticals, Inc. is a company developing drugs for patients with rare diseases. In mid-June, the company announced results from the Phase 2 clinical trial of a drug (IMO-8400) to treat adult patients with dermatomyositis.

The objective of the randomized, double blind, placebo-controlled trial was to assess the drug’s effectiveness, as well as the safety and dosage, in adult patients with dermatomyositis. The success of the drug was measured by changes in the Cutaneous Dermatomyositis Disease Area and Severity Index ("CDASI") score versus a placebo.

Over 24 weeks, 30 eligible people were randomized and received injections of the drug or placebo.

The drug trial did not meet its goal of measurably improving the CDASI score versus placebo.

Although the trial wasn’t successful, clinical trials are an important part of the Food and Drug Administration’s (FDA) process for bringing new medicines and treatments to patients.

All over the world, there are active trials investigating myositis related conditions. You can see those global studies on the National Institutes of Health’s Clinical Trails website. In the United States, there are studies currently recruiting participants, including the Abatacept clinical trial at George Washington University, an Experimental Treatment Study at the Cleveland Clinic, a Microbiome study at Seattle Children’s Hospital, a Myorisk Study at the NIH, a Pediatric Identical twins at multiple institutions, a Twin/Sibling Study conducted by the National Institute of Environmental Health Sciences, and a study of Premature Atherosclerosis in JDM at the Children's Hospital at Montefiore, Bronx, NY.

Good science requires lots of data. One of the challenges of studying a rare disease is that there are fewer people to participate in trials, which means less data. Participation in clinical trials can advance understanding of rare disease and accelerate treatments. You can discover opportunities to participate in research and contribute to progress against JM at this Cure JM website page.

SUN PROTECTION TIPS

We’re in the hottest months of the year. Sun rays are strongest between 10 a.m. and 4 p.m., but ultraviolet light (UV) rays are an issue from sun up to sun down. The sun’s harmful light can penetrate clouds, fog, and rain.

UV exposure may cause disease flares, so sun protection (sunscreen and sun avoidance), is crucial.

Here are some tips to protect your children from head to toe:

• Sunscreen
  Before going outside, put on a broad-spectrum sunscreen with a sun protection factor (SPF) of at least 15. Make this a habit, even on cloudy days. Don't forget to put a thick layer on all parts of exposed skin. Apply the equivalent of two tablespoons of sunscreen to exposed areas. If you're using a spray, apply until an even sheen appears on the skin. Reapply the sunscreen every two hours, and more frequently if you're swimming or sweating. Make sure to check the expiration date of your sunscreen. Sunscreen has a shelf life of no more than three years. Store sunscreen in a dry, cool place, as the life of the product is shortened if it has been exposed to high temperatures.
• Hats
  Wear a hat with a brim that shades the face, ears and the back of the neck. Tightly woven fabrics like canvas work best. Darker colors offer more UV protection. Avoid straw hats which allow more light to penetrate the skin.
• Sunglasses
  Use sunglasses that block both UVA and UVB. Wrap-around sunglasses work best because they block UV rays from the side, not just the front.
• Clothes
  Darker colored, long-sleeved shirts and long pants provide the best protection from UV rays. Keep clothes dry, too, as wet clothing offers much less UV protection. There are a range of UPF (Ultra-violet Protection Factor)-rated clothing & accessories available on the market. CureJM.org has a list of products that meet industry standards, although we don't endorse any the products listed.

CLICK HERE FOR OUR SUN PROTECTION RESOURCE PAGE

CURE JM FAMILIES RECOGNIZED DURING WASHINGTON NATIONALS BASEBALL GAME

On July 2 the Washington Nationals baseball team honored ten Cure JM families and Dr. Steven Ray Mitchell, a Pediatric Rheumatologist at Georgetown University Hospital and Medical Chair of the Cure JM Walk Strong to Cure JM™ DC 2018, during a pre-game ceremony.

Dr. Mitchell and the Cure JM families were invited onto the field before thousands of cheering fans. The announcer recognized the bravery of the children and parents and invited the crowd to applaud for the families.

JM mom, Colleen Marchetta, attended the game with her husband and two children.

“We rarely get the opportunity to attend events with other Cure JM families. It was such an awesome experience to bring awareness to Cure JM with so many other families. Getting the word out about JM will only help our cause in bringing awareness and raising funds to find a cure! As an added bonus, the game was a blast and going on the field pre-game was a once in a lifetime opportunity!”

UPCOMING EVENTS

5th Annual Cowboy Brad Concert for Cure JM
Saturday, July 21, Festivities 4:00pm
YMCA of the Rockies, Hyde Chapel
2515 Tunnel Road
Estes Park, CO

At 4:00pm, 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 7:00pm-8:00pm. RSVP to laurel.krider@curejm.org.

Evening Under the Stars with Special Guest Don Middlebrook & The Pearl Divers
Saturday, August 4th, Doors open at 5:00pm.
Presentation 6:00pm, Buffet 6:30pm, Band 7:00pm
Spikes Beach and Grill
310 Eastlake Drive
Warsaw, IN

A portion of proceeds from this family event benefit Cure JM Foundation. Event will take place rain or shine! For tickets, contact Randy Jones, (574) 551-2580. Contact kristine.alderfer@curejm.org for more information.
FLYER

8th Annual Yard Sale to Cure JM
Friday, August 24th and Saturday, August 25th
Lake Stevens, WA 98258

Items for sale can be dropped off on Thursday. Contact Julie Shevlin for drop off arrangements or any questions at julie.shevlin@curejm.org.

2nd Annual Massachusetts Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk
Sunday, September 30th, 10:00am - Noon
The Arboretum at Green Hill Park
50 Skyline Drive
Worcester, MA 01605

Registration opens 9:00am. Walk Festivities begin 10:00am. Contact melissa.corey@curejm.org for more information.
CLICK HERE TO REGISTER OR LEARN MORE

3rd Annual Seattle Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk
Saturday October 6th, 10:00am
Marymoor Park, Marybelle Meadow
6046 West Lake Sammamish Pkwy NE
Redmond, WA 98052

Registration opens 9:00am. Walk Festivities begin 10:00am. Contact shannon.malloy@curejm.org for more information.
CLICK HERE TO REGISTER OR LEARN MORE

2nd Annual New York Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk
Sunday, October 14th
Scarsdale High School
1057 Post Road
Scarsdale, NY 10583

Registration opens 9:00am. Walk Festivities begin 10:00am. Contact tracy.vanness@curejm.org to learn more or get involved.
CLICK HERE TO REGISTER OR LEARN MORE

Do you have a story you would like to share? Contact enews@curejm.org.