Check out our May 2019 edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!
In March, I had the pleasure of attending the 14th Annual BASH for Augie’s Quest in San Diego. The event provided an opportunity for fitness industry leaders to come together and celebrate their contributions to the ALS research space, while also raising nearly $1.9 million for ALS research.
Being in San Diego did give me the opportunity to escape some cold Massachusetts weather, but the highlight of my weekend was having the opportunity to share exciting updates in ALS research with families in Southern California. For these families, and so many more around the country, there is so much information out there about ALS – the best plan of action for treatment, the best hospitals and doctors, what to recognize in the progression of the disease.
As a scientist and researcher, I have a little different perspective on things I want these families to know. Please share this with friends and family throughout this month, as we hope to build as much awareness as possible to help end ALS once and for all. May is ALS Awareness Month, so we need your help to spread the word!
Today, there is hope for those diagnosed with ALS.
You have the opportunity to be a part of that hope.
As the Chief Scientific Officer at ALS Therapy Development Institute (ALS TDI), I am proud to say that we have the most robust pipeline of potential ALS treatments in our entire history.
ALS is an incredibly complex disease, because each person’s ALS is totally unique. We know that we will need several distinct treatment options to support the diversity of the ALS community, and give every ALS patient the chance to fight this disease.
ALS TDI is unique because we understand the need for a comprehensive approach to ALS treatment; and with so many drugs in the research pipeline all under one roof, we are able to quickly apply findings across multiple projects and accelerate our research. Because of the support Augie’s Quest has offered us, I am confident ALS TDI is equipped to develop treatments as fast or faster than anyone else. And today, ALS patients can help – help themselves and the research.
To date, we have enrolled more than 500 individuals with ALS in our Precision Medicine (PMP) program. Through PMP, we monitor areas like movement and speech – two key functions affected by ALS. All of our clinical assessments are captured using in-home technologies. Furthermore, each participant has access to their own data so they can be empowered by information to work with their physicians to make the best decisions about their own care. We are committed to personal and open relationships with people with ALS- and we hope that by partnering with new patients in the program, we can make huge leaps in the research process.
None of this would be possible without the support of Augie’s Quest and the entire ALS community, and I am so optimistic for what the future will bring. From Boston to San Diego, there’s no community more important to me.
If you know someone with ALS who could benefit from these efforts – reach out! To learn more about the Precision Medicine Program, please visit www.als.net/precision-medicine.