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AID CLINICAL TRIAL
Abatacept In Juvenile Dermatomyositis - now accepting patients age seven and up
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. To enroll or for more details, please contact Sirlekar Bullocks at sbullocks@mfa.gwu.edu or call (202) 750-0377
Click here for additional opportunities to participate in JM research studies.
CURE JM BOARD APPROVES A NEW ROUND OF RESEARCH GRANTS:
An Update from Executive Director James Minow
Executive Director James Minow
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“The Cure JM Board of Directors has recently approved a round of new grants. In my view, these grants are moving us in some exciting new directions in JM research, building on the important work that we have funded over the past 14 years.”
Click here to read more.
THANK YOU “HALF A MILLION”
As you may know, thanks to you, Cure JM won FIRST PLACE in the CrowdRise Holiday Charity Challenge last month! Your generosity and hard work raised and won over half a million dollars for Juvenile Myositis Research. In 2016, your support funded research at 17 prestigious research institutions, creating new and exciting momentum in JM Research.
“And now, because of you, we look forward to 2017 with great hope and optimism,” says Cure JM Co-Founder Shari Hume. “Your generosity is making new advances in Juvenile Myositis research possible in 2017 and get closer to our ultimate goal of a cure.”
Look for more details on the research and programs you are making possible in the Cure JM Foundation Impact Report coming out in March.
CONGRATULATIONS TO CURE JM CFO, DENISE DORIA
Cure JM CFO Denise Doris |
Cure JM is proud to announce our volunteer CFO, Denise Doria, has been recognized as a recipient for YWCA’s BRAVA Award in Greenwich, CT. This award is given to outstanding women achievers who have excelled in their professional careers and who also volunteer their time and talent to help others.
Denise is a partner and certified public accountant at the accounting firm Walter McKeever & Co, LLC; and she also serves on the Board of Directors at Cure JM Foundation and First County Bank headquartered in Stamford, CT. Denise is also the aunt of a child with JM.
Denise said she is “honored to receive this award along with ten exceptional women who are leaders in their field and play a significant role in philanthropic causes.”
YWCA Greenwich President and CEO Mary Lee Kiernan said, “We are honored to recognize so many outstanding women at this year’s Brava Awards. Their extraordinary accomplishments and willingness to share their success with others through mentoring and volunteerism, exemplify everything we value and stand for at the YWCA.”
The 2017 Brava Awards honorees will be celebrated at a luncheon on Friday, February 10, at the Hyatt Regency in Greenwich. Brava plays a significant role in supporting many YWCA programs and services, including Domestic Abuse Services, scholarships for children in YWCA programs, free Women’s Leadership Seminars, and more.
PRESIDENT OBAMA SIGNS THE 21ST CENTURY CURES ACT INTO LAW
On December 13, 2016, President Obama signed into law the 21st Century Cures Act (the Act) with strong bipartisan support. Thank you to all of our Cure JM families and supporters who made phone calls, sent emails, or wrote letters to Congress to help make this happen.
There are important provisions in the 21st Century Cures Act that we expect will benefit patients with JM and other rare diseases:
- Reauthorization of the Rare Pediatric Disease Priority Review Voucher program through 2020
- Streamlining of FDA review of genetically targeted and protein variant therapies for rare diseases
- $4.8 Million in funding for the NIH that includes the Precision Medicine Initiative
- Requirement for companies to publicly post their expanded access policies on their websites
- Expansion of the Patient-Focused Drug Development Initiative and requirements for the FDA to report on how patient experience data was used in regulatory review
- Provisions to foster programs to improve mental health and deter substance abuse
Overall, the 21st Century Cures Act is a major step forward for rare disease patients. Again, thanks for making the 21st Century Cures Act a reality!!
THANK YOU TO EVERYONE WHO MADE THE 10th CURE JM NATIONAL CONFERENCE AND FUNDRAISER A HUGE SUCCESS
Thank you to everyone who attended the Cure JM National Family Conference or walked in the Walk Strong to Cure JM™ Austin inaugural event or ran in the Austin Marathon. A full recap of the event and links to view the recorded sessions coming in the March eNews.
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