News

CARRA March 2021 Newsletter - Issue 2

 

CARRA Virtual Annual Scientific Meeting Registration is Open!

CARRA’s Virtual Annual Scientific Meeting is quickly approaching! If you haven’t registered yet, make sure to do so today. For additional details, including the full schedule of events, click here.

DON’T FORGET!

After you register, don't forget to download the Online Event Guide and Mobile App. You will be able to access zoom session links, recorded sessions you may have missed, and many other important features.


CARRA Participates in Youth Congress for the LFA Advocacy Summit

The Lupus Foundation of America’s 2021 Digital Advocacy Summit, March 2-4, brought together thousands of lupus advocates from across the country to participate in educational and networking opportunities, while also advocating for funding of critical lupus programs. The LFA’s 2021 Advocacy Summit was the largest advocacy gathering of people with lupus ever, and included hundreds of virtual meetings between members of Congress and lupus advocates asking their elected officials to support policies that will improve the quality of life for everyone affected by the disease. There were over 3,700 registrants including over 200 that were 21 years of age or under.

During the first two days of the Advocacy Summit, attendees gathered virtually to participate in educational sessions with lupus experts including a virtual Youth Congress with tailored programming for youth and young adults with lupus and their families. For the second year in a row, CARRA researchers participated in the Youth Congress providing information on mental health and wellness in youth with lupus. The session included information about the importance of mental health, how having lupus can affect your emotional health and ways to cope with stress. Participants also learned more about mental health concerns in light of COVID-19 and ways to get involved with research - including being a part of the CARRA registry. Mariel dela Paz, MSW, LCSW from UCSF Benioff Children’s Hospital co-presented with the CARRA researchers, providing insight and information on coping strategies that youth and young adults with lupus can utilize.

The educational sessions were recorded and will be available for viewing until April 2 at www.lupus.vfairs.com.

A special thank you to Andrea Knight, Natoshia Cunningham, Tamar Rubinstein, Vincent Del Gaizo, and Aimee Hersch, for participating on behalf of CARRA!

“I am grateful to have been part of the Summit. I learned so much from my fellow panelists and from the attendees! To those who are coping with lupus, thank you for sharing your stories, your challenges, and successes! You are an inspiration to us.”   -- Natoshia Cunngingham, CARRA Mental Health Workgroup Co-Leader

“It was a great experience to represent CARRA at the LFA Advocacy Summit. There was so much insight to be gained from connecting with the panelists, patients and families on the important issue of mental health. And it was a great opportunity to help get young people interested and involved in lupus research.”  -- Andrea Knight, CARRA SLE Committee Chair and Mental Health Workgroup Co-Leader

“It was such an honor to be able to present alongside Andrea, Natoshia, and Vincent at the Youth Congress for the LFA’s Summit. Enormously grateful that the LFA gave us the opportunity to share what we’ve learned and what we hope to accomplish in CARRA toward improving mental health for youth with SLE.”  --Tamar Rubinstein, CARRA Mental Health Workgroup Co-Leader


Spring is Walk Season—Join Team CARRA and Support the Arthritis Foundation!

Help us support our Premier Partner, the Arthritis Foundation, by participating in the annual Walk to Cure Arthritis.  The Arthritis Foundation supports CARRA’s research programs and activities including but not limited to the CARRA-Arthritis Foundation Intramural Funding Program, the CARRA Registry, and the Annual Scientific Meeting.  Visit CARRA’s National Team to learn how to form a team under the CARRA umbrella.

You can contact Vincent Del Gaizo, Director of Partnerships & Patient Engagement, for help in forming your team or linking your existing team.

You can also donate to the CARRA Virtual Team here.


World Young Rheumatic Diseases Day: March 18

World Young Rheumatic Diseases Day is an annual event that takes place on the 18th of March. Through the international networks of PReS and ENCA, the ultimate aim of WORD Day is to raise the awareness and knowledge level of parents, doctors, primary practitioners, teachers, and the general public. The goal is to help first and foremost in early diagnoses with quick referrals to specialised pediatric rheumatologists.

Spread the word that children and young people get rheumatic disease too by using #wordday2021 and sharing your story on social media.

Follow along with WORD Day events on Twitter and Facebook.

 

 


Arthritis Foundation Updates

 

Advocating for Pediatric Subspecialty Loan Repayment Program

The Arthritis Foundation invites you to a special virtual Hill day urging Congress to fund the newly reauthorized Pediatric Subspecialty Loan Repayment Program. Funding this program is of the highest priority for our organization, and there is a great sense of urgency in getting it funded in the FY2022 appropriations bill, building on the momentum from the recent reauthorization. This is an all-hands-on-deck task and cannot be done without strong constituent support. Members of Congress need to hear from people in the pediatric subspecialty field and impacted families who can speak to just how important it is to access to specialty care. If you would like to participate or have questions, contact Anna Hyde [email protected].

March 18 is World JA Day!

On March 18, World JA Day, join the Arthritis        Foundation to raise awareness. Help to spread the word about Arthritis Foundation's life changing resources and community of JA families. Encourage your patients to visit https://www.arthritis.org/liveyes/premium/ja.

Follow the Arthritis Foundation on social media @ArthritisFdn and use the hashtags #worldjuvenilearthritisday and #strongerthanJA on Twitter and Facebook.

 


Important Dates and Deadlines