Contact Us | Site Map
Raising Awareness, Supporting Families, Funding Research, Finding a Cure
DONATE
SHOW MENU HIDE MENU
  • Our Role & Impact

    About Cure JM

    • Our Story
    • Our Milestones
    • Our 2019 Impact Report
    • Our Financial Information
    • Regional Chapters

    Newsroom

    • Executive Director Reports
    • Monthly Family News
    • Event Photos
    • Cure JM in the News
    • Press Releases

    Leadership

    • Board of Directors
    • Medical Advisory Board
    • Regional Chapter Presidents
    • National Leadership Council
    • Honorary Advisory Council
    • Family Support Network Contacts
    • Grandparent Support Representatives
    • Fundraising Coaches
    • Cure JM Staff
    • Awards

    Multimedia

    • Cure JM Videos
    • Video for the Newly Diagnosed
    • Cure JM Event Photos
    • Myositis and You Book
    • Downloadable Brochures
    • Welcome Kits
  • About JM

    Juvenile Myositis Info

    • What is JM?
    • JM Links

    Photos

    • Signs and Symptoms of JM
    • The Faces of JM
    • Cure JM Angels
  • For Families

    Resources

    • Welcome Kit
    • Newly Diagnosed: Helpful Info
    • Newly Diagnosed: Video
    • Find a Doctor
    • Mental Health Resources
    • Newsletters
    • Cure JM Videos
    • JM Family Stories
    • JM Patient Online Journals & Other Links
    • Sample Medication Chart
    • Cure JM Conference Recaps

    Rehab Resources

    • Stretching Video

    Stay Connected

    • Regional Chapters
    • Regional Contacts
    • Family Support Network
    • Grandparent Support Network (C.A.R.E.)
    • Team JM Fundraising Network
    • Teen Portal
    • Events in Your Area
    • Social Media
    • Cure JM Conference

    Navigate the System

    • Top Ten Tips from JM Families
    • Health Insurance Tips & Links
    • School Resources
    • Social Security Resources
    • Other Government Resources
    • Sun Protection Products & Resources
    • Advice from JM Families
    • Q & A with a Child Life Specialist
    • Child’s Checklist for Dr. Visits

     

     

    •  
  • Healthcare Pros

    Support

    • Healthcare Professionals Homepage
    • Medical Advisory Board
    • Join the Cure JM Medical Network

    Grants & Fellowships

    • Research Funding/Grant Opportunities
    • Cure JM Grant Recipients
    • NEW! Research Fellowships

    CME Opportunities and Conferences

    • Accredited CME Activities
    • Cure JM Medical Conference

    Treatment

    • Consensus Protocols for JDM
    • Cure JM Research & Treatment Centers

    Research

    • Current Cure JM Funded Research
    • Published Research Studies
    • Cure JM Research & Treatment Centers
    • Other JM Research
    • Funding Opportunities for Researchers
    • Q & A with Latest Grantees
    • Studies Needing Volunteers

    Resources

    • Myositis and You eBook
    • Cure JM Conference Recaps
    • Cure JM Medical Network Newsletter
  • Research

    Cure JM Research & Treatment Centers

    • Cure JM Centers of Excellence

    Cure JM Survey Results

    • Early Diagnosis Initiative

    JM Research Studies

    • Cure JM Currently Funded Research and Grant Recipients
    • Cure JM Fellowship Recipients
    • Published Research Studies Supported by Cure JM
    • Cure JM Conference Recaps
    • Cure JM Funded Research 2006-2013
    • Additional JM Research

    JM Patients Needed

    • Research Studies Needing Volunteers
    • Patient Powered Research Network

    Funding Opportunities

    • Cure JM Research Grants: Eligibility and Requirements
    • Cure JM Fellowships
  • Get Involved

    Events

    • Walk Strong Across America®
    • Events in Your Area
    • National Conference and Fundraiser

    Connect

    • Join Cure JM
    • Regional Chapters

    Donate

    • One-Time Gift
    • Monthly Gift
    • Legacy Gift
    • Other Ways to Give
    • Printable Donation Form
    • Combined Federal Campaign

    Fundraise

    • Join Team JM Fundraising Network
    • Set-up a Family Fundraising Page
    • Fundraising Guidelines & Application
    • First 4 Steps for a Fundraiser
    • 54 Fundraising Ideas
    • Fundraising Toolkits
    • Fundraising Coaches
    • Fundraising Video
    • Impact Report for Sponsors
    • Awareness Tools
    • Attracting Media Coverage

    Participate in Research

    • Research Studies Needing Volunteers
    • Patient Powered Research Network

    Show Your Support

    • Cure JM Store
    • Shop at Amazon, iGive, etc.

    Join

    • Team JM
    • Grandparents CARE
    • Patient Registry / Family Support Network



Share/Bookmark

Cure JM Foundation Newsletter

Cure JM Newsletter

March, 2017

-

10th Cure JM National Conference

-

Recap from Jim Minow

-

Conference Session Videos Now Online

-

Walk Strong™ Texas

-

Marathon Fundraiser Highlights

-

Grandparents Session

-

Kids' Fun Camp

-

Teens, Tweens & YA

-

Conference Awards

Cure JM’s 10th National Conference and Fundraising Event

120 Families Make Austin, Texas Event a Success

Cure JM Medical Asvisory Board fielding questions during conference session

Cure JM Medical Advisory Committee members Dr. Ann Reed, Dr. Adam Huber, Dr. Lauren Pachman, and Dr. Lisa Rider answer family questions during the Conference General Session.

In February, Cure JM held its 10th National Family Educational Conference and Fundraising Event.

This was our largest conference ever, with 120 families attending -- including 60 grandparents, over 80 teens and young adults, 75 children, and over 200 parents.

40 medical professionals also participated in one-day educational event to share the latest advancements in JM research and treatments.

Families enjoyed time to connect with other families as well as educational sessions on a wide-variety of topics related to Juvenile Myositis research and care.

Families also had the opportunity to participate in a research study and provide input to researchers who wanted to hear directly from families. More information is coming soon on how families can participate in this research from home. View the complete Conference Recap here, including photos, videos, and educational content.


Conference Recap from Jim Minow

Executive Director James Minow

Click here to read the full conference recap from Cure JM Executive Director, Jim Minow.

"There were many highlights, and among the most important were the connections that families were able to make with many of our presenting doctors and researchers," says Jim.  "One of the goals of the conference is to enable families to interact with the some of the best juvenile myositis clinicians in the world."

"The Conference celebrated the triumph of a "can do" approach to the challenges of living with JM.  Nowhere was this more exemplified than through the children themselves, opening the awards banquet with a most wonderful heart and spirit in their special rendition of "Fight Song."  Click here to view the video.  


View Videos of Conference Sessions

For the first time, recorded sessions of the conference can be viewed here.

"We are very excited to be able to offer recordings of conference sessions," says Kristine Alderfer, Cure JM Board of Directors and Chair of the National Conference. "It is an important step forward for us to be able to share this valuable educational content with all Cure JM families."

The Cure JM National Family Conference in Austin, Texas was live-streamed and recorded for the first time thanks to the extraordinary generosity of Cure JM grandparents Bruce and Judy Leetz. Thank you, Leetz family!


Inaugural Texas Walk Strong to Cure JM™

Walk strong to Cure JM Group Photo

Over 500 walkers came out for the Inaugural Central Texas
Walk strong to Cure JM™

Over 500 walkers came out for the Inaugural Central Texas "Walk strong to Cure JM". Organized by a team of parents led by Walk Chair April Duley, the event was a smashing success.

"April Duley and the entire Texas team did a phenomenal job," said Jim Minow, Cure JM Executive Director. "Raising over $200,000 was an outstanding accomplishment."

Mom and Daughter after the race

After walking one mile through the Lakeway City Park families arrived back at the walk site for fun, food, face painting, games, and awards.

Cure JM Foundation launched its Walk strong to Cure JM™ program in 2016. At these events, families, friends, neighbors, and other supporters in the local community band together to raise money for JM research through a family-friendly walk.

We look forward to seeing all families, friends, and supporters at an upcoming Walk strong to Cure JM™ event soon. Visit www.curejm.org/walkstrong to learn more or start an event in your community.

  • Greater Chicago - 5/7/17
  • Greater New York - 5/13/17
  • Washington, D.C. - 6/4/17
  • Pacific Northwest walk- 10/7/17
  • Greater Dallas-Forth- Fall 2017
  • Greater Houston - 1/13/18
  • Central Texas - Spring 2018

Contact lauren.alvord@curejm.org to learn more.


Race Highlights from the Austin Marathon

Team Cure JM Marathon Runners

Team Cure JM raised over $40,000 by participating in the Austin Marathon.

Over a dozen Cure JM runners participated in Team Cure JM in the Austin Marathon.

Cure JM families participated in the 5k or half-marathon to raise over $40,000 for Juvenile Myositis research.

Thank you to Team Cure JM in the Austin Marathon for making a difference.

"JM research is made possible by Cure JM families stepping forward to get involved," says Cure JM Chairman Rhonda McKeever. "The success and impact of Cure JM is bestowed on all of us."


Grandparent and Extended Family Session

Grandparents at Conference

Grandparents are an important part of Cure JM, offering support to their families and participating in the pursuit of a cure for their grandchildren.

Over 70 Grandparents and Extended family members joined the Grandparent Session at the conference.

"This session was an exceptional chance for the grandparents to share ideas and learn from each other," said Cure JM Grandparent Representative Laurel Krider.

"Grandparents play a crucial role in supporting their families and supporting Cure JM's mission."

Some of the many ways that Grandparents shared that they are involved in supporting their families and Cure JM:

  • Participating in the care of their grandchild with JM
  • Caring for siblings during their grandchild's appointments
  • Letting your child (the parents) vent to you -- just listen
  • Raising funds for JM research by sending a letter to friends and family -- Grandfather Walter McKeever gave many tips and tricks on how to send a letter. Contact shannon.malloy@curejm.org for a custom letter that your family can send.

Thank you to all of the grandparents who attended and are involved from home, your commitment is making a big impact.

To learn more about how grandparents can get involved contact shannon.malloy@curejm.org


Kids' Fun Camp at Cure JM's National Conference

Kidsdoing Karoke

The kids all had fun while their parents attended educational sessions.

Over 70 Cure JM kids and siblings, age 3-10, came together for a "Camp JM" - themed Kids' Fun Camp.

The camp was taught by a team of elementary school teachers led by a Cure JM aunt, Meagan McDevitt.

"The first purpose of the Camp JM was to give the kids an unforgettable day of fun and new friendship," said Meagan.

"And we did that!  We all had a blast while their parents were at the educational sessions."

Wide shot of Kid's Camp

Over 70 JM kids and siblings enjoyed the supervised Kids'  Camp.

Kids playing Air Guitar

Making new friends who understand me!

Providing the kids an opportunity to connect and make new friendships with kids just like them is an important part of the Cure JM conference. And for the JM patients and siblings who attended the kids' camp, these new friendships often last the whole year through.

"The best part of the conference was the ability for kids to connect to other JM kids," said one mother. "We look forward to staying in touch with the new friends we made this weekend."

For the parents, grandparents, physicians, and researchers one highlight of the weekend was watching the kids perform a song and dance to the inspirational song "Fight Song" by Rachel Platten.

-


Teen, Tween, and Young Adult Highlights

Four JM Teens

Over 70 teens, tweens, and young adults came together for the weekend, many participating in the one-day Teen and Tween Photography Workshop

Over 70 teens, tweens, and young adults came together to participate in their own events including:

  • A Transition to Adult Care Workshop
  • A Teen Photography, Art, and Multi-Media Workshop
  • A Teen-Only Session where teens could connect and share with each other
  • A Siblings Matter session where teenage siblings could connect and share their experiences
  • A Teen Panel where teens shared their experiences and answered questions from parents

Tweens with Brainy Smurf

A surprise visit from Brainy Smurf!

"My twelve-year-old daughter attended sessions just for teens, met other teens, and learned from physicians how to take care of her own medical needs," says one dad, first-time attendee Chris Bokis "The teen sessions were invaluable."

-


Upcoming Events Scheduled Across the U.S.

Local Cure JM Fundraiser

Visit www.curejm.org/events for more information about upcoming events in your area.

For more information about starting an event in your community contact shannon.malloy@curejm.org

-


Congratulation to these Cure JM families

At the conference in Austin, several Cure JM families were recognized for their exceptional service and commitment to advancing Cure JM's mission.

"We are grateful to all Cure JM families and friends who dedicate their time to raising the much-needed funds for JM research," says Cure JM co-founder Shari Hume.  "Without you, our progress would not be possible.  I am humbled and inspired by the unrelenting commitment, the passion, and the grit of our community to find better treatments and a cure.  Without a doubt, 2017 will be a year filled with tremendous hope and significant progress in research."

April Duley receives her award

April Duley receives her award

Congratulations to these "Cure JM Heroes":

  • April Duley
  • Kevin and Doreen Coffey and family
  • Meagan McDevitt
  • Sharon & Martin Ortega and the "Mega Ortegas"
  • Michelle Best and Family

The Doria and McKeever Families

The Doria and McKeever Families

And congratulations to the following award winners:

  • Denise Koch - Cure JM Excellence in Advocacy Award
  • Morgan Gleason - Cure JM Youth Ambassador Award
  • Julie, Justyn, Tessa, and Lochlan Shevlin - Mason’s Miracle Award in memory of Mason Smedley
  • Dr. Ruy Carrasco - Cure JM Physician of Excellence Award
  • Dr. Lisa Rider - Lifetime Achievement in Juvenile Myositis Research
  • Denise Doria, Nic Doria, and Walter McKeever - Cure JM Champion Award
  • Rhonda McKeever - Legacy Leadership Award

Marge Coffey and Family

Marge Coffey and Family

And a special thanks to Cure JM grandmother Marge Coffey, who made possible Cure JM’s investment in a 3-year drug development program at National Center for Advancing Translational Science (NCATS). The NCATS team will screen hundreds of thousands of potential drugs, as well as existing drugs for other diseases, and perform follow-up studies on the most promising drugs. The expected result is a short list of new and repurposed drugs that have the potential to improve the prognosis for JM.

Thank you again to these families and the hundreds of families who are working tirelessly to support each other and advance JM research.


Cure JM Logo


Sponsored By

Bruce and Judy Leetz

Sheila and Harry Harvey

FedEx
Idera
Alderfer Bergen Retirement Planning
Arthritis Foundation
Austin Trust Company
Borrow Lenses

Costigan Family Foundation

Drywall Interiors
Dun and Bradstreet

The Friedkin Group

JMC

Lurie Children's Hospital of Chicago

Macworld Trade Group, Inc.
Staples

Upstream Investment Partners

 

Newsletters

Current Newsletter

Past Newsletters

January 2021

December 2020

November 2020

October 2020

September 2020

August 2020

March 2020

February 2020

January 2020

December 2019

November 2019

October 2019

September 2019

August 2019

July 2019

June 2019

May 2019

April 2019

March 2019

February 2019

January 2019

December 2018

November 2018

October 2018

September 2018

August 2018

July 2018

2018 National Family Conference Recap

June 2018

May 2018

April 2018

March 2018

February 2018

November 2017

October 2017

September 2017

August 2017

June 2017

May 2017

April 2017

March 2017

February 2017

January 2017

November 2016

October 2016

September 2016

August 2016

July 2016

June 2016

May 2016

April 2016

March 2016

February 2016

January 2016

October 2015

September 2015

July 2015

June 2015

May 2015

April 2015

March 2015

November 2014

August 2014

August 2014 Family Version

July 2014

June 2014

May 2014

March 2014

February 2014

October 2013

August 2013

May 2013

Spring 2013

Fall/Winter 2012

Summer 2012

Spring 2012

2011 Holiday Message

December 2011

November 2011

Fall 2011

July 2011

May 2011

March 2011

February 2011

January 2011

December 2010

November 2010

News & Events

Recent News

Upcoming Events

Cure JM in the News

Cure JM Newsletter

Team JM Homepage

Cure JM Foundation Nonprofit Overview and Reviews on GreatNonprofits
Top-Rated Since 2011
Guidestar Exchange
BIA Seal

CONTACT US

Cure JM Foundation
19309 Winmeade Drive
Suite 204
Leesburg, VA 20176
(202) 596-6267

Donate Now

IRS Tax ID #35-2222262
Corporate Matching Donations
Privacy Policy
Non-Discrimination & Inclusion

This website is provided for educational and informational purposes only. Cure JM is not engaged in rendering medical advice or professional services and this information should not be used for diagnosing or treating a health problem. The site author and the content providers make no representation or warranties, expressed or implied. Providing links to other websites does not imply that Cure JM endorses the information or services provided on those websites. The organizations operating those websites are solely responsible for the content found on their websites.
©2004-2021 Cure JM Foundation. All rights reserved.

Privacy Policy | Non-Discrimination Policy | Legal Disclaimer | Contact Us