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NEW REVERAGEN PARTNERSHIP TO PURSUE VAMOROLONE AS POTENTIAL JUVENILE MYOSITIS TREATMENT

Cure JM has engaged in a new strategic partnership with ReveraGen, a clinical-stage drug development company with a focus on developing new anti-inflammatory therapeutics.

“Investing in a strategic new partnership with ReveraGen is advancing one of Cure JM’s key research priorities -- drug development,” says Cure JM Executive Director, Jim Minow. “ReveraGen’s corticosteroid replacement compound, vamorolone, may be effective in managing Juvenile Myositis—this is what we hope to discover.” In pre-clinical and clinical trials for other chronic inflammatory states, vamorolone has been well tolerated without the side effects of prednisone or other corticosteroids.

Corticosteroids (prednisone is the most common) work well in controlling inflammation. But using steroids comes at a tremendous cost: stunted growth, fragile bones, cataracts, and weakened muscle are some of the side effects.

Vamorolone works by replicating the good, anti-inflammatory effects of steroids without the side effects by modifying the chemistry of the drug. Specifically, the aspect of corticosteroids where many genes are turned on is removed in vamorolone. This gene activity is responsible for the majority of side effects in steroids.

Vamorolone is in phase II clinical trials in pediatric Duchene Muscular Dystrophy, and is on the “fast track” approval process within the FDA. The goal of Cure JM’s engagement with ReveraGen is to conduct the preliminary studies necessary to add JM as a targeted indication for vamorolone in future clinical trials.

GIVING TUESDAY - NOVEMBER 28TH

Save the date for the biggest day of the year! Cure JM is again competing in the annual CrowdRise Holiday Challenge.

In the Holiday Challenge, charities like Cure JM compete to raise the most funds. And the charity that raises the most money on Giving Tuesday, November 28th, will win $50,000 for its cause.

Cure JM has won a top prize the last four years in a row, and we need your help to do it again. For a small rare disease organization like Cure JM, winning this prize is crucial to helping move Cure JM’s Strategic Research Plan forward.

CURE JM CENTERS OF EXCELLENCE

If you feel like your child or teen might benefit from a second opinion, you or your medical provider can contact one of Cure JM’s Centers for Excellence:

• The George Washington University Medical Faculty Associates Myositis Center in Washington, D.C. is a multidisciplinary effort made possible by a grant from Cure JM Foundation. As a national referral site for inflammatory muscle diseases, the Center is often called upon to either establish a diagnosis or to provide a second opinion related to the management of children and adults with Juvenile Myositis. Working in collaboration with the National Institutes of Health (NIH), the Center also specializes in Juvenile Myositis research and education. The minimum patient age for this clinic is 8 years. For more information about scheduling an appointment at the GW Myositis Center, please contact the clinic coordinator at 202-741-3069.
• The Cure JM Center of Excellence in Juvenile Myositis Care and Research at Stanley Manne Children’s Research Institute, affiliated with Ann & Robert H. Lurie Children’s Hospital of Chicago. This Center of Excellence in Juvenile Myositis care and research can provide a second opinion through clinic visit for children and teens. For more information about scheduling an appointment, please contact the clinic coordinator at 312-227-6270.

Click here to learn more.

PATIENTS URGENTLY NEEDED FOR DRUG TRIAL

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 is 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,

BACK IN YOUR SCHOOL ROUTINE? REMEMBER GOOD COMMUNICATION IS KEY

The importance of good communication with your child’s school can’t be understated. Note your teachers’ preferred method of communication -- do they prefer email, phone, meetings, or written notes from home. Also, utilize the school’s communication tools. Many schools have online portals where you can look at homework or upcoming events so you and your student can be prepared.

Teaching good communication is also key. It is recommend that parents model and teach good communications skills. Include your child in school meetings with teachers and administrators. Increase your child’s participation and responsibility each year. The goal is an empowered Adolescent/Young Adult who can communicate and advocate for themselves.

Some families have found it helpful to give the school a letter signed by you or your child’s physician. A sample letter that can be downloaded and edited is provided on the Cure JM website here.

TIPS & TRICKS FOR NAVIGATING SCHOOL

Many families find it helpful to meet with the school and set out individual goals for their student. Some meetings are done informally with a teacher, administrator(s), school nurse, and parent. Some families work with their school or an advocate to design a more formal plan such as a 504 or IEP. We recommend discussing your family’s particular situation with your school administration or teacher to map out the best options to meet your student’s needs.

Many kids and teens need accommodations at school, for a list of some common accommodations, click here.

For more information, view the past presentations from Cure JM’s National Family Conference on Cure JM’s website, www.curejm.org. The 2016 presentation “Navigating School” for both Elementary and Middle/High School families is available on the Cure JM website here. The 2017 session “Patient Advocacy - Navigating School” was live-streamed and recorded and can be viewed here.

SAVE THE DATE!
CURE JM NATIONAL CONFERENCE

The 12th Annual Cure JM National Family Conference and Fundraiser 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.

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.

BOOK NOW

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Registration for the Cure JM Family Conference will open in January. The cost to register for the conference is $100 per adult (age 18+). Under age 18 is free of charge. Visit www.curejm.org/dc or contact to learn more.

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