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Nikki J

Mar 22, 2012
This is part of a fundraising letter from my neurologist ( this is the first time I have received one and I donated to them on more than one occasion so I did not mind at all getting it)
I think I removed all fundraising parts but thought the rest might be of interest

We, at the Massachusetts General Hospital (MGH) ALS Multidisciplinary Clinic and the Neurological Clinical Research Institute (NCRI), approach each day with hope and passion that we are another day closer to conquering amyotrophic lateral sclerosis. Our optimism is not naïve. As clinicians and researchers, we base our hope in the amazing scientific discoveries we see in the field, from stem cell breakthroughs, to more promising biomarkers than we have ever seen before, to the advent of gene therapy trials.

At MGH, we have a highly regarded expertise in designing and carrying out clinical trials for ALS, and we are leaders in the identification of ALS biomarkers using imaging and biofluid analysis (blood and spinal fluid, mainly). We are the coordinating center for the Northeast ALS Consortium (NEALS; ALS Trials | ALS Clinical Research | The Northeast ALS Consortium (NEALS)), we maintain the NEALS biorepository, and our faculty members hold leadership positions in this and other ALS consortia around the world. We run more clinical trials than any other center worldwide. And, we are committed to scientific collaboration - from sharing samples and data, to working behind the scenes with investigators and companies aiming to pursue therapeutics development in ALS, we make collaboration our model for success in the fight against ALS.

Over the past year, two of our own patients set out to raise ALS awareness and funding with the Ice Bucket Challenge. As we all know, the world rose to the Challenge and as a result a brighter light shines on ALS than in any time since Lou Gehrig gave his iconic speech 75 years ago. The funds that were raised through this effort will push big initiatives forward and underlie important infrastructure improvements for ALS researchers and trial opportunities for people with ALS. But more work remains.

Our MGH ALS team members work together to provide excellence in clinical care and research.

In 2015,
Bring the best therapies forward for testing in people with ALS today.
Launch new trials of retigabine, tocilizumab (Actemra), and inosine, representing some of the most promising potential therapies on the horizon.
Discover new therapies ready for clinical trials in ALS by issuing a call to researchers around the globe to elicit the most innovative ideas for potential therapies. Help design and fund these ideas.
Accelerate diagnosis and therapy development by supporting new and ongoing state of the art PET and MRI imaging studies and blood and spinal fluid biomarker collections and studies
Continue to provide 24/7 excellence in care to all our patients and families by supporting our multidisciplinary team of ALS healthcare providers

In 2014, some examples of projects include:

New studies aimed at understanding the marked heterogeneity of ALS with goal to develop targeted, personalized treatments. These include investigations into Vitamin D, uric acid, and inflammation.
Clinical Trials of mexiletine, immunosuppression and stem cells.
Imaging and sample biomarker studies in bulbar onset ALS and primary lateral sclerosis to better understand the underlying biology and develop new treatments.
A collaborative natural history study of C9 ALS
An outreach research ALS nurse to connect people with ALS to research opportunities and provides information and education for our patients about ALS biology and research.
Thank you for sharing this...

shared on fb pals only
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