We were able to make arrangements for a trip to Boston on very short notice, and visit family and attend A White Coat Affair, a fundraiser for ALS TDI. It helped that Friday was Nevada Day, which meant no school.
We visited with my Uncle Bill and Aunt Candy,
my cousin Lauren and her husband Chris and their adorable son Everett who is 11 months old.They even indulged me with the Cubs World Series game on TV.
The fall colors were spectacular.
There was a rainbow Saturday morning. I love rainbows and often they seem to be a sign of something special.
On Saturday we arranged a tour of the ALS TDI lab in Cambridge. My godmother, “Aunt” Alice, joined us and it was great to spend time with her.
It was interesting to see where research goes on to end ALS. There were photos of people with ALS all over the lab, to keep the researchers inspired.
We even spotted the freezer where the promising new drug AT-1501 is being stored until funding is available to start clinical trials.
I want it now! There are at least 3 drugs awaiting FDA approval or at the end of clinical trials or about to start clinical trials. The pace of research is amazing, thanks to increased awareness and generous donors.
We had a great tour group, including the 16 year old emcee for the White Coat Affair who had lost his dad to ALS, with his mom, a man who had recently lost his wife to ALS with his uncle, a pharmaceutical researcher from another company in California with one of the promising drugs, and another guy who lost his wife.
After the tour Stan, Aunt Alice, and I went to a waterfront pub in the North End to spend more time together.It was wonderful to spend time with her because she won’t fly anymore, so we didn’t know when we would see each other again. Now we are pretty confident we will return to Boston again.
We went to the White Coat Affair at the Sheraton in downtown Boston. Even the governor of Massachusetts, Charlie Baker, was there. When I wrote “thank you for being here” on my Boogie Board, he hugged me.
It was fun to dress up.and it was fun to see people we met last week in Oakland and people we met on the tour earlier that day, as well as Sarah and her family. Sarah is an ALS TDI ambassador and she was one of the featured speakers, with her daughter on her lap. They were funny and poignant and very motivating to all the potential donors in front of her
We sat with Dr. Steve Perrin, the CEO of ALS TDI, and his wife; Clare Reich, Cody’s sister who we met at the Purple Rain party; a Board Member, Lynne Nieto whose husband Augie is the Chairman of the Board and has been living with ALS for 12 years; Jennifer McErlain, ALS TDI Oakland; Sarah and her husband; and a couple from North of Boston – Natalie and Tom. Natalie was diagnosed a year ago and she has familial ALS also. Her brother has it, and she has traced it back in her family tree to the 1700s, when it was called muscle wasting. It was inspiring to be with so many ALS patients who are living the best life they can and working toward a future without this awful disease.
On Sunday morning we visited with Uncle Bill and Aunt Candy and Lauren and Chris and Everett.
On the way to the airport we drove around the area to see the foliage – really beautiful color palette with more variety than Reno.
It was wonderful to combine love and connection of family with connection and hope through ALS TDI.
And then we got home in time to go to dinner with my dad and Andy at Great Basin Brewing Co and watch the Cubs win. Go Cubs!