Message from MIHRA Leadership to Welcome 2025!
✨Happy New Year✨ to all!
The MIHRA Leadership of Board Members, Patient Advisors, Scientific Advisors, Project Leaders and MIHRA Expert Personnel wish you and your family the best of peace, joy and health for this coming year.
This message reflects upon the richness of friendship, remarkable graciousness, and what seems like unprecedented generosity experienced in barely one revolution around the sun since MIHRA’s ‘birthday’ on 20 October 2023 when the community became incorporated as a 501c3 non-profit charitable research organization. As we find ourselves hurtling ever closer to our vision of rare diseases research being a sustainable prospect for our community of myositis diseases investigators and patients, this first year indeed saw the remarkable efforts of the community to galvanize with an abundance of energy and good will to realize several foundational ‘dreams’ of MIHRA’s pre-incorporation strategic planning. Remarkable that our very first year yielded over eleven publications from our groups.
True to the multi-lingual and multi-cultural roots of the abbreviated name, ✨MIHRA ✨ (pronounced mee’–rah) with global meanings such as goodness, kindness, community, communal governance & peace, our collective scientific community has unleashed an abundance of awareness, educational, care, scientific advancement and community fortifying gems over the past year!
Better together, MIHRA is better for the intense support of our patient advocacy, research community and industry partners as well as the continued kindness and mentorship from our ‘big sib’ disease organizations ensuring we had a good grasp of ‘the ropes’, like the American Thoracic Society (ATS), Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), Guillain-Barre Syndrome – Chronic Inflammatory Demyelinating Polyneuropathy (GBS-CIDP) Foundation, the Lupus Research Alliance (LRA) and the Scleroderma Clinical Trials Consortium (SCTC), as well as embarking on educational collaborations with the American College of Rheumatology (ACR).
Also true to the diverse linguistic roots of our name, this past year has seen the MIHRA community of myositis diseases researchers stand firm in the belief that truly excellent science requires proactive adoption of inclusive values that insist upon and protect equity of voice and visibility across career levels, gender, ethnicity, race, disciplines, geo-position and socioeconomic status. Though a lot of MIHRA’s programming is open to public participation, MIHRA’s cultural expectations of inclusion, equity, inter-collegial positive regard and proactive mentorship as central priorities are safeguarded through the attestation of membership and thus required for participation in highly interactive programming.
These value positions have likely contributed greatly to the rapid and global membership growth and support from global rheumatology societies, rendering over 400 individual members representing all continents but Antarctica. This past year, multiple interactive occasions have substantiated a genuine interest in each other’s experiences, clinical perspectives and availability of resources for investigators and for patients worldwide.
These are value stances that also recognize patients and non-physician researchers as serious and essential leaders in our field. Along these lines, MIHRA has adopted that health-related quality of life (HRQoL) and well-being for children and adults living with myositis diseases demand equal investigative attention as that of molecular discoveries. As such, we have seen groups like the MIHRA Psychological Impact Scientific Working Group (SWG) progress with rigour and strong collaboration with other MIHRA SWGs and MIHRA community partners such as CARRA, PReS, TMA and others to evaluate metrics for the clinical setting and for clinical trial readiness, care and communication models as well as interventions on psychological health and self-efficacy, such as their recent publication on exercise in collaboration with MIHRA Exercise & Rehabilitation SWG.
MIHRA’s inclusionary values spurred its holistic programming and whole-hearted commitment to the enrichment of early and future researchers as a priority legacy. As such, MIHRA awarded nine(!!!) fellowships to early and mid-career cross-disciplinary and cross-specialty recipients to participate in the Global Conference on Myositis (GCOM) 2024, which resulted in new and continued global collaborations in our field. This MIHRA sponsored fellowship was a collaboration between our GCOM 2024 and iMyoS partners. Thanks to MIHRA’s Scientific Advisory and Financial Committee, fellowships for GCOM 2026 have already been secured, as well as, planning has begun for MIHRA’s GCOM 2026 Pre-Conference Career Enhancement Retreat outside of Lisbon. MIHRA Career Enhancement Programming (CEP) has also rolled out Write On! a program to deepen grant and manuscript writing habits in rare diseases, MIHRA Journal Club and MIHRA Global Case Conference.
Further, under the advisement of MIHRA CEP, MIHRA has adopted policies related to internal grant-making for collaborative community projects and fellowship funding that ensure participation and cultivation of earlier career investigators. These include a town hall prior to official funding announcements to address queries and expectations related to funding opportunities, and also internal grant proposals requiring visible and proactive inclusion of early career investigators with the goals of accelerating leadership and scientific skills.
The end of 2024 culminated in a significant event in the myositis investigator and patient communities which was the MIHRA Clinical Trial Sites Network’s (CTSN) Global Community Forum to address our collective perspectives on CAR-T /NK therapeutic trials in myositis diseases. MIHRA CTSN hosted this forum and also qualitative research endeavors of which both led to a road of actionable paths that the MIHRA community will address as a community. The forum and the reporting of preliminary results can be viewed here.
This year has also seen our community submit our first tax return(!), become a certified U.S. government vendor and also become adopted as a recognized institution by the National Institutes of Health (NIH). Thus, the MIHRA community – with incredible cooperation from approximately 45 sites and organizations (and growing) – was able to submit a U54 mega-grant proposal to National Center for Advancing Translational Sciences (NCATS) and the Rare Diseases Clinical Research Network (RDCRN). Our application perfectly reflected the community’s original 5-year strategic planning to provide the community with goals to distribute at least $300K annually for project grants, at least $100K annually to invest in career enhancement programming as well as additional funding to enable partner organizations to collaborate on building community-driven, high quality yet feasible, compliant bio-data harmonization programming – as well as seeking funding that addresses essential and urgent areas of clinical trial readiness in myositis diseases to improve reliability of skin and muscle measures, clinical trial design elements, natural history projects that examine phenotyping, interim community consensus on treatment as well as identification or development of measures in areas of lack such as in HRQoL measures in inclusion body myositis (IBM). From this effort, under the kind hand-holding mentorship of Lupus Research Alliance, a MIHRA Public Private Partnership project program has emerged which engages regulatory agencies, patients, investigators, industry and other stakeholders on select projects that benefit from close working relations to achieve consensus on priorities perspectives along with the sharing of retrospective and prospective trial and registry data to advance clinical trial readiness and care. The MIHRA Exercise and Rehabilitation SWG has already completed a positive initial phase investigation into device already registered under 510(k) FDA exemption Usability and Feasibility of the Carbonhand Glove in People with Myositis Diseases with Impaired Hand Function.
While as a community we await NCATS RDCRN application scoring, the journey has yielded a lasting impact of kind encouragement, graciousness and guidance as a community and from NCATS, RDCRN staff and consortia members, as well as our other rare diseases partner organization. MIHRA is committed to contributing to the rare diseases community, and in our first year have been compelled to pass on the generosity by sharing our resources with and assisting other new rare disease groups – because we are and can only be better together.
Though clearly a hard-working community for myositis diseases and rare disease science, the MIHRA community has been fortified by the joy and interest in each other beyond scientific endeavors, and this year has provided opportunities in Pittsburgh at GCOM, Savannah at AANEM and Washington DC at ACR to commemorate a dear mentor to many in the myositis diseases community, Professor Paul Plotz, experience each other as friends who dance, wear glitter, enjoy walking, nature & wildlife, explore culture and history, hearing music together at a historic DC jazz club and watch sunsets over the Savannah river together.
This year, we anticipate, will hold as much magic together through science and the wonder of strong human relationships.
The MIHRA Board of Directors
Barbara Shafranski, Elie Naddaf, Floranne Ernste, Helene Alexanderson, Julie Paik, Lesley Ann Saketkoo, Mazen Dimachkie, Pedro Machado
MIHRA Patient Advisory
Anneli Dihkan, Christine Lowe, Ingrid de Groot, Irene Oakley, Joe Sanchez, Karen Cheng, Roland Mische, Silke Schlüter, Suzanne Edison
MIHRA Scientific Advisory
Annet van Royen, Bianca Lang, Chet Oddis, David Isenberg, Fred Miller, Ingrid Lundberg, Jiri Vencovsky, Kristin Highland, Lisa Christopher-Stine, Marianne de Visser, Masataka Kuwana, Vicky Werth
MIHRA Program Leads
Alejandro Benitez, Antonia Valenzuela, Christian Lood, Christopher Mecoli, Didem Saygin, Jessica Day, Latika Gupta, Malin Regardt, Myma Albayda, Pari Basharat