Thank you to Dr. Jon Mink University of Rochester, Dr. Susan Cotman (MGH/Harvard University) and Dr. Florian Eichler (MGH/ Harvard University) for all you do! Chris and I met with these spectacular folks in Boston on Saturday June 1, 2019. The bond between the University of Rochester and Massachusetts General Hospital remains strong. They are both working together as a team on the Natural History and Biorepository Database for children with all types of Batten Disease. A database is vital in the cure of any disease. This database Our Promise to Nicholas has worked many years fundraising toward continues to be utilized by expert NCL clinician, scientist and researchers.
We are also proud to support Dr. Florian Eichler and his team of clinicians at MGH. He has the past history treating children with rare diseases. He has the drive and passion to follow in Dr. Kathy Sims footsteps and re-open the NCL (Batten Disease) clinic for all types of NCL patients. This is great news for New England to have him on our team. If you have a child with NCL or a rare neurological disease I can put you in contact with Dr. Eichler. Spread the word!
Thank you all for your support toward our charity. You are making a difference!
