Nancy Frates'(@momfrates) son, Pete had his number (3) retired two weeks ago by the BC Eagles, the baseball team he once captained. Back in 2012, he was diagnosed with ALS. And two years later, he became the inspiration for the Ice Bucket Challenge, which has raised in the neighborhood of almost a quarter billion dollars for ALS research. His mother, Nancy, has been a force of nature championing the cause. She's just returned from Washington DC, where she and hundreds of other ALS advocates scored a big victory. 

Before Pete Frates' ALS diagnosis, he was selling group insurance, and expressed the need for a career change. Nancy Frates said that while she doesn't believe in coincidences in life, she believes that "he knew that he had been groomed to be a leader." While her son thought he would be joining the military, instead he was drafted for a different cause. "He was going to fight a war," she said. "And six months later, he found himself in a war. It wasn't the conventional one." Now the Frates family and their Ice Bucket Challege are the face of the fight against ALS. 

Frates said that Pete's number retirement ceremony was amazing. "To have that number three on the wall [is] a constant reminder of his courage and inspiration." She also said that of all the awards and trophies her son has collected, this was "probably the highest accolade he has received." 

Frates recently went to Washington for the annual ALS Advocacy Days, as she is now a lobbyist for issues regarding the ALS community. Frates said that this year they had three asks: 

1. A waiver of the 5 month waiting period for SSDI for ALS patients.  

2. Support for the Dormant Therapies Act. 

3. Support for a change to assistive technology covered by CMS for ALS patients and their unique needs.

While she was there, Rhode Island Senator Whitehouse and Congressman Moulton introduced a bill in the Senate and House regarding the waiver of the five month waiting period. Frates also said that there has been progress on the research front. "They are starting to talk in time-frames," she said. "They think possibly within four to five years." She called Boston the leader in ALS research.