The path may not be smooth, and the climb may be steep, but, together, we can climb mountains. Please join me in the fight against IBM.
Kevin Dooley, MD
Chairman, Cure IBM
Donate to Support Inclusion Body Myositis Research
Thank you for your interest in supporting inclusion body myositis (IBM)!
Cure IBM believes that more research is the most critical need for inclusion body myositis.
Doctors and scientists now have the tools to increase our understanding of IBM, but they need money to fund their work.
Your donation will move us one step closer to treatment.
Cure IBM does not accept financial contributions, but it strongly encourages you to donate to one of the following three organizations:
- The IBM Research Fund at Johns Hopkins Medical Center
- The Cure IBM Research Fund at Washington University in St. Louis, MO
- The Myositis Association
A link to each organization is listed below, along with a description of each institution.
Team Cure IBM also raises money for research by participating in the Million Dollar Bike Ride. Check back in January for information about how YOU can help in the 2022 ride!
The IBM Research Fund at Johns Hopkins Medical Center
Started with a personal donation of $10,000 from Dr. Kevin Dooley, the Chairman and author of Cure IBM, the new IBM Research Fund will support inclusion body myositis research at Johns Hopkins, a leading medical center. Thomas Lloyd, MD, PhD, the co-director of the Johns Hopkins Myositis Center, writes:
For the last 15 years at Johns Hopkins, I have devoted myself to two goals: understanding the cause of IBM and identifying better treatment options. In truth, it is the former endeavor that provides the latter options. Essential to that discovery process is understanding the root cause(s). With this in mind, I believe that research in genetics and animal model development holds great promise to change the way that we approach and treat IBM for the future. Along these lines, we have focused on two major research endeavors: (1) transcriptomics in sporadic IBM – understanding the changes in gene expression in IBM muscle at the single cell level, and (2) development of a novel mouse “xenograft” model of IBM using patient muscle biopsy tissue – this model faithfully recapitulates all the known pathologic changes of IBM, and we are testing new IBM therapies in this mouse model to determine if they have benefit in human IBM muscle.
Take me to the Johns Hopkins webpage for donations to the IBM Research Fund
If you would like to send a check by mail, please call the number listed near the top of the Johns Hopkins webpage to receive instructions.
The Cure IBM Research Fund at Washington University in St. Louis, MO
Started with a personal donation of $10,000 from Dr. Kevin Dooley, the Chairman of Cure IBM, the new Cure IBM Research Fund will support inclusion body myositis research at Washington University, home to one of the top medical schools in the United States. Conrad Weihl, MD, PhD, a neuromuscular specialist and leading IBM researcher at Washington University, writes:
Our research group has made novel mechanistic insights into the pathogenesis of hereditary inclusion body myopathy (HIBM) and sporadic inclusion body myositis (sIBM). Hereditary causes of IBM, often due to a single genetic mutation, are rare but inform us about disease pathogenesis that may be common in sIBM. One example are disease mutations in two proteins associated with HIBM, VCP and SQSTM1, in which disease variants are also found in ~2-3% of patients with sIBM. These proteins participate in the degradation of intracellular proteins via a process known as autophagy or “self-eating.” Our lab is interested in understanding how disturbances in autophagy lead to sIBM.
Our more recent studies have harnessed the power of large data sets generated on patient tissues and patient DNA. By overlapping these datasets, we have identified risk alleles that may stratify patients or treatment strategies. Specifically, we identified variants in a novel risk allele, FYCO1 that is overrepresented in sIBM patients. FYCO1 functions similarly to that of VCP and SQSTM1 and further unifies autophagic degradation as a therapeutic target in sIBM.
Our current and future studies will: 1) Further define manipulation of autophagy as a therapeutic target in sIBM. 2) Develop proteomic signatures of sIBM pathology that may help to predict treatment responsiveness. And 3) Generate tractable models of FYCO1 associated sIBM.
Take me to the Washington University webpage for donations to the Cure IBM Research Fund
Your selection of the “Cure IBM Research Fund” is already entered in the second box, “I prefer to enter my own designation,” so you do not need to complete the first box. If you choose to send a check by mail, you will need to click the “Give by Mail” button on the right, and enter “Cure IBM Research Fund” on the Giving Form.
The Myositis Association
The Myositis Association (TMA) is a non-profit organization that improves the lives of patients with all types of myositis, including inclusion body myositis, polymyositis, dermatomyositis, and juvenile myositis. The Myositis Association provides extensive education for patients and physicians. The Annual Patient Conference is highly regarded, and regional KIT (Keep in Touch) groups provide additional opportunities for patients to receive support from one another.
When you contribute to The Myositis Association, your donation can support the broad spectrum of TMA activities, or you can specify that you would like your donation to be restricted to supporting inclusion body myositis research.
Take me to The Myositis Association Donation Page
Million Dollar Bike Ride
For the past two years, Team Cure IBM has participated in the Million Dollar Bike Ride, a rare disease fundraising event sponsored by the Orphan Disease Center at the University of Pennsylvania.
In 2019, our efforts resulted in a $102,340 IBM research grant which was awarded to Dr. Steven Greenberg of Harvard Medical School and the Brigham and Women’s Hospital in Boston.
In 2020, the ride and our fundraising activities were affected by the coronavirus, but was still a success. The Million Dollar Bike Ride was held as a virtual event, and team members participated from their local areas. Team Cure IBM was responsible for a $68.245 research grant which was awarded to Dr. Thomas Lloyd of John Hopkins University to study the Efficacy of Rapamycin and Phenylbutyrate in a Xenograft Model of IBM.
The Million Dollar Bike Ride is an amazing opportunity to increase awareness of IBM and to fund new IBM research. Team Cure IBM won’t be participating in 2021, but we’ll be looking for new volunteers to join us when we ride again in 2022!
by Kevin Dooley, MD
Revised May 17, 2021