Myositis Support and Understanding (MSU) is excited to announce a speaking engagement about myositis at Corbus Pharmaceuticals on May 29, 2018
Corbus Pharmaceuticals will host Jerry Williams, the Founder and President of MSU, Heather Spadaccini, Jerry’s friend and part-time caregiver, and author, Emily A. Filmore, a Co-Founding Director and Current Board Advisor for MSU in Norwood, MA to share their personal myositis journeys with Corbus Pharma employees on May 29, 2018. This gathering will help employees at all levels better understand the many ways myositis affects lives.
The employees of Corbus Pharma are already passionate about the work they do, and Jerry, Heather, and Emily will help build on that passion through their personal experiences, their long history of patient-advocacy, and living life with myositis for many years.
“Facts and figures are important, of course,” Emily acknowledges, “but having the opportunity to share how myositis affects us as patients and caregivers is paramount. We know, the bottom line is, that the researchers are developing a medication to treat inflammatory conditions. However, we hope by giving the Corbus Pharma team our personal stories of life with myositis, from disease onset through testing, diagnosis, treatment, and resulting complications, plus the ensuing toll it takes on emotional, interpersonal, and financial health; we will not only promote awareness of our rare disease but provide insight into the patient experience.”
Understanding a patient’s journey, notably the intensity and difficulty of current treatment options, can have a direct impact on the work employees at Corbus Pharma are doing in studying a non-steroidal, non-immune-suppressing treatment option. At present, steroids and off-label use of various drugs that suppress the immune system, which are not FDA approved for myositis, are the types of drugs available. These drugs can make life with treatment nearly as bad, and sometimes worse symptomatically, than the disease itself. Patients are often saddled with untenable decisions: leave the myositis disease untreated, allowing the body to attack itself unfettered, or take dangerous medications, not developed for myositis, that while potentially arresting the disease, bring dangerous side effects and complications.
Seeing this first hand has a powerful impact; connecting employees directly with patient and caregiver experiences can provide invaluable insight and create a personal connection making the work they do day in and day out even more important.
“We believe Corbus Pharma’s willingness to bring us in to speak our personal experiences with myositis shows great dedication by the company’s management to their employees, their success, and the myositis community at large,” says Jerry Williams.
This latest opportunity to speak to researchers is in furtherance of MSU’s mission to educate and advocate for myositis patients. One year ago, Jerry and Heather spoke to another research team, at Idera Pharmaceuticals, as part of Myositis Awareness Month, 2017, to share their experiences and MSU’s goals and future. The reception and feedback were outstanding. We, as an organization, intend to continue fostering these crucial relationships as we advocate for treatments for our members.
Idera Pharmaceuticals and Corbus Pharmaceuticals are both companies at the forefront of drug research for skin-predominant dermatomyositis and have welcomed MSU, its members, myositis patients, and those who care for them showing a strong interest in learning more about the people who would benefit from a successful drug trial.
Corbus Pharmaceuticals experimental drug, lenabasum, is being studied for skin-predominate dermatomyositis and additional autoimmune and fibrotic diseases.
Idera Pharmaceuticals investigational drug, IMO-8400, is being studied for skin-predominate dermatomyositis.
More information about the clinical trials for lenabasum and IMO-8400 will be forthcoming.
Although this event is not open to the public, we do hope to share parts of the experience and key takeaways.
To arrange for a myositis patient or representative of MSU to speak at your organization, please contact Myositis Support and Understanding at info@understandingmyositis.org.
