"At the ALS Multidisciplinary Clinic in the Healey Center for ALS at Massachusetts General Hospital, we strongly believe in providing the best care 24/7 while also partnering with our patients and families in research to find cures. The pace of advances in both care and research is so fast now in ALS ; I want to be sure all my patients have access to all the latest information and options. Collaboration is key to both providing the best care for our patients and to finding the answers to ALS. We have a wonderful multidisciplinary team at Mass General who provide care and expertise to our patients. We partner with local health care providers in the community and foundations to ensure our patients have access to everything they need. Collaborating with investigators all over the world, we have pioneered ways to share data samples and research data globally and to accelerate how clinical trials are conducted. To ensure that our patients know about all the care and research options, we recently hired a full-time research nurse who is 100% available to answer any questions about clinical trials. Every person with ALS deserves to have easy access to all the information out there for their care; we strive every day to do our best to care for people and to develop new treatments for our patients," says Cudkowicz.
My advice is that you not read this note now, but save it until you're having a truly miserable day, because it is guaranteed to lift your spirits.
You may recall that a while back, I emailed you inquiring about clinical trials at Mass General. Within half an hour, you replied, cc'd members of your team, and very quickly I was enrolled in the clinical trial.
Last week was my last study visit. Frankly, if I had to bet, I would bet I have been receiving a placebo. But along with whatever was in the bag, I received the most devoted care imaginable. When I would return home on Friday nights and describe the visits, my spouse would refer to my trips to Boston as my "spa vacation."
Put simply, the staff consistently displayed the highest levels of professionalism and compassion. And best of all, two of the staff independently told me the secret: "Dr. Cudkowicz sets the tone at the top."
I could elaborate, but I feel that every second Dr. Cudkowicz spends reading my emails delays by one second her discovery of the cure for ALS. So just two more words: thank you. Oh! and, please consider me for any future clinical trials. My veins are yours."