“Patients are one of the most disruptive technologies in advancing drug development.”
That’s what Dr. Chris Austin, the director of the National Center for Advancing Translations Sciences at the National Institutes of Health has said. And he knows. He’s been working with patients for years to develop treatments for diseases and has been part of many successful approvals. It’s true, patients and patient-led organizations are the most powerful catalyst to speed treatments from research labs to patient’s medicine cabinets and doctors’ offices. Here are five ways you can take action now to accelerate treatments for CMT.
1. Give to research
Making a donation to fuel promising research is the most important thing you can do to ensure large pharmaceutical companies will invest in CMT. Between now and September 30, a group of generous donors will double your donation, so every dollar you contribute has twice the impact for CMT research.
2. Visit a CMT Clinical Center.
When you see a specialist in CMT at a CMT Clinical Center, your visit will help answer critical questions that will inform larger studies about CMT, including the development of treatments and the design of clinical trials.
3. Enroll in a patient contact registry.
There are several CMT patient contact registries that exist to recruit patients for clinical trials. They collect data from patients about how CMT affects a person’s quality of life and how it progresses over time. When you’re enrolled in the contact registry, you may also be recruited for clinical trials.
4. Start talking about why CMT is a disease worth funding.
CMT is a devastating disease and can even be fatal. For those who have learned to live with their symptoms and pain, we still face the fear of watching our bodies deteriorate without being able to do anything about it. The truth is, there is nothing mild about CMT, and we must shine the light on why drug development companies must invest in CMT now. Companies need to understand how significant this disease is to our community’s lives to attract more funding. That starts with each of us, and with you.
5. Help your friends and family understand why finding treatments for CMT is so important.
Even though CMT is as common as multiple sclerosis (MS) globally, many people have never heard of CMT. While MS has 17 drugs to help treat the disease, CMT has none. No individual or family with CMT should have to live in fear of their future. It’s our turn.
Start by sharing these resources with your networks and on social media to help tell that story.