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CURE JM APPOINTS FIRST CHIEF SCIENTIFIC OFFICER
The Cure JM Foundation has appointed Dr. Andrew Heaton as its first Chief Scientific Officer.
Dr. Heaton brings a 30-year career in pharmaceutical discovery, development, and translational studies, and most recently served as the CEO and President of Heaton-Brown Life Sciences and Novogen North America. Dr. Heaton ushered several oncology compounds through Phase I, II and III clinical trials.
James Minow, Executive Director of Cure JM said: “Andrew has exceptional experience and a strong track record of innovation in the fields of biotech, drug development and business development. His dedication to finding treatments to rare and life-threatening diseases and compassion for patients and families make him the ideal choice to lead our research program to the next level of achievement.”
The CSO will serve as Cure JM's science and research leader, proactively driving the growth and effectiveness of Cure JM’s grants and clinical research program. In addition, the CSO will provide strategic oversight, guidance, and leadership to the Cure JM Research Priorities. Dr. Heaton will serve as key staff to Cure JM’s Research Committee and Medical Advisory Board.
Dr. Heaton received his Bachelor of Science University of Tasmania, his doctorate from James Cook University of North Queensland, his MBA from Melbourne Business School, and completed study training at Imperial College London.
He has been issued several patents for his work and has published multiple papers in peer-reviewed scientific journals.
SAVE THE DATE FOR THE 2019 NATIONAL FAMILY CONFERENCE
The 13th Cure JM National Conference is June 21 - 23, 2019, at the Hyatt Lodge at McDonald's Campus in Oak Brook, IL, approximately 20 miles west of Chicago. Instructions on how to register for the conference and book your room in the Cure JM block will be sent by email in January.
All family members and grandparents of those affected by Juvenile Myositis (JM), including Juvenile Dermatomyositis and Juvenile Polymyositis are invited to attend.
Friday and Saturday, families will participate in small-group breakout sessions on a wide variety of topics of interest to Cure JM families. Families will also participate in social time and activities designed to facilitate connecting with other Cure JM families.
Saturday, all participants are invited to attend interactive sessions with an elite group of JM experts who will give an update on the latest research and answer audience questions.
Sunday, families will participate in the Chicago Walk Strong to Cure JM™ family fun event to raise funds for JM research. The walk will feature food, fun, entertainment and a short walk. This is a highlight of the weekend and a fun way to connect with other families!
Mark the date and we looking forward to seeing you June 21 - 23, 2019, for the 13th Annual Family Conference!
NAVIGATING THE SCHOOL YEAR
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.
We have collected tools and recommendations for setting up accommodations for your child.
The 2018 video presentation, “Navigating School and Community” is available on the Cure JM website here.
CURE JM CURRENTLY FUNDED RESEARCH AND PROGRAMS
We fund research that results in better treatments, improved outcomes and ultimately, a cure. Currently, we're funding 24 important studies. Here are a couple of study highlights, but you can look at the complete list here.
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Genetic Risk Factors in Juvenile Dermatomyositis
Claire Deakin, Ph.D.
Post-Doctoral Fellow at University College, London
The project is studying genetic risk factors for JDM using samples from a large number of North American and UK patients with JDM. By studying large numbers of patients, this project may also be able to study genetic risk factors for developing specific features, such as the formation of calcium deposits. It will also help us find out whether the age patients are when they get disease influences the role of genetic differences in JDM or its subgroups. The biological effect of these genetic differences will also be studied in order to help us understand the cause of disease better. This research may lead to more information about the causes of JDM and why certain patients develop certain features.
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Reveragen Partnership to Pursue Vamorolone As Potential Juvenile Myositis Treatment
Kanneboyina Nagaraju, DVM, MVSc, PhD
Cure JM has partnered with ReveraGen, a clinical-stage drug development company with a focus on developing new anti-inflammatory therapeutics. 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. Vamorolone works by replicating the good, anti-inflammatory effects of steroids without the side effects by modifying the chemistry of the drug.
Ultrasound as a Diagnostic Tool
Laura Tasan, M.D.
University of Pittsburgh
Dr. Tasan is studying the feasibility of Ultrasound as a diagnostic tool for muscle disease in children. If successful, Ultrasound could supplement or replace the use of costlier MRIs to monitor disease activity in JM.
JOIN US AT A WALK NEAR YOU
Did you know? Cure JM Chapters have annual walks!
Find a Walk Strong™ event near you:
- Worcester, MA - Sunday, September 30, 2018
- Seattle, WA - Saturday, October 6, 2018
- Scarsdale, NY - Sunday, October 14, 2018
- Houston - Saturday, February 9, 2019
- Austin-San Antonio - Saturday, February 9, 2019
- Southern California - Saturday, February 23, 2019
- Central Florida - February, 2019
- Northern Florida - March, 2019
- Dallas-Fort Worth - May, 2019
- Northern California - Saturday, May 4, 2019
- Philadelphia, PA - Saturday, May 4, 2019
- Columbus, Ohio - Spring 2019
- Pittsburgh, PA - Spring 2019
- Washington, D.C. - Spring 2019
- Minneapolis, Minnesota - Saturday, June 1, 2019
- Chicago, IL - Sunday, June 23, 2019
Contact us at info@curejm.org for more information or to get involved.
UPCOMING EVENTS
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
Crossfit for a Cure!
Saturday, October 13th, 9:00am
Crossfit Williamsville
485 Cayuga Road
Cheektowaga, NY 14225
For more information, contact Colleen Marchetta at colleengrant1@hotmail.com, or visit the Facebook Event page.
2nd Annual New York Walk Strong to Cure JM™ Family Fun Event and Fundraising Walk
Sunday, October 14th
Quaker Ridge Elementary School
Scarsdale, NY
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
3rd Annual Chicago Cure JM Chapter - Family Educational Event
Saturday, October 27th. 1:00pm - 4:00pm
Ambria College of Nursing
5210 Trillium Blvd.
Hoffman Estates, IL 60192
Join fellow Chicago Chapter families for an afternoon of social time and learning based around the theme Dealing with Juvenile Myositis: The Disease, the Medications, and Life. Bring the whole family! Kids and teens will enjoy social time and activities while caregivers attend educational sessions. Complimentary snacks will be served. To RSVP or learn more, contact jennifer.coe@curejm.org or denise.koch@curejm.org.
2nd Annual Cure JM Minnesota Chapter Family Educational Event
Sunday, October 28th. 11:00am - 1:00pm
University of Minnesota Masonic Children's Hospital, South Building Wilf Family Center, on the 2nd/Lobby Floor, room 1 and 2
2450 Riverside Avenue
Minneapolis, MN 55454
This event will include complimentary lunch and snacks, kids' activities, and teen social time and activities. Please RVSP to Cure JM Minnesota Chapter President Danielle Harris at danielle.harris@curejm.org.
Christmas Shop for Cure JM
Saturday, November 3rd
Warsaw, IN
Contact kristine.alderfer@curejm.org for more information.
Cure JM Foundation 13th National Family Conference and Fundraiser
June 21st - 23rd, 2019
Oak Brook, IL
Do you have a story you would like to share? Contact enews@curejm.org. |
