Off We Go to Boston
On March 30, 2011 we head off to Boston, Massachusetts to attend our second Tay Sachs Disease Conference. We look forward to connecting with our second families who walk the same walk as us and to learn more of the latest research updates on Gene Therapy and the other experimental medications and therapies to help fight Tay Sachs Disease. Because traveling to the east coast with children is so tough, we decided to leave Audrey Bella with my parents. From what I hear, she’s already having a blast with Grandpa and Grandma who spoil her like crazy! Luckily, the plane trip to Boston was not so bad as Gavin slept through the entire flight. More updates to come. Stay tuned!!!
Category : Blog
Sarah T.
1 year ago
I am glad Gavin had a comfortable trip. I am wishing he and his family the very best, and will be sure to check in. I had no idea that Tay Sachs had a conference in Boston – and if you do not mind – I would appreciate a link to this information. I do not have a loved one living with TSD or any other lysosomal storage disorder, however, I want to learn as much as I can. I feel that children with this disease and their families most certainly need more support. Just because this illness is uncommon does not mean it should be ignored. I was in the hospital alot as a child (I had neuroblastoma) and know how difficult it be for both patient and parent. I will be thinking of your family and wishing you all the best!