ALS Advocacy and Fundraising 2014-15

Summer 2014: ALS Ice Bucket Challenge! Seemingly out of nowhere, this disease was being talked about and receiving a blast of funding. Every night the two of us watched ice bucket videos, laughed, and loved them all. Thank you to every person who doused & donated.

October 2014: The family participated in a Walk to Defeat ALS in northern Massachusetts. Our “team” was tiny then; wait until fall 2015!

October 2014: Stephen and Jane were nominated to be Patient Research Ambassadors by NEALS, the Northeast ALS consortium, and they attended a 2-day conference in Florida, learning from cutting edge researchers, statisticians, and other persons with ALS (or pALS).

January 2015: We attended a party at MGH to honor Dr. James Berry, the first “Winthrop Family Scholar in ALS Sciences.” James is a rising supernova in the ALS field, the co-Director of the multidisciplinary ALS Clinic at MGH, and we are lucky that he is Stephen’s neurologist. Casey and Hannah attended the party, as well as James’s small children; we marveled how toddlers and teenagers coexist so perfectly.

February 2015: Stephen’s lifetime coin collection was auctioned off at Stack’s Bowers in NYC to raise funds for the Stephen Winthrop ALS Fund at Harvard University. Eight of our extended family members attended the auction in person, witnessing a net total of $1.3 million, all for ALS research.

February 2015: Stephen was elected to the national board of the ALS Association! They are so lucky to have him . . . and he’s a pALS. Wow.

May 2015: As part of a group of 600, including 170 pALS (the largest number ever in attendance), Stephen and Jane attended the ALS Advocacy Days in Washington, DC, which included lobbying both our Senators and several members of Congress for four small pieces of legislation. One of them, the Steve Gleason Act, was subsequently passed unanimously by both houses and signed into law by Pres. Obama in July.

[May 2015: Stephen received an award from Human Relations Services for his community service to several agencies. His speech moved the room to tears, and the event raised more money for HRS than any other year.

May 2015: Stephen and Jane attended their 35th Harvard Reunion (the 25th reunion of when they became a couple), and Stephen spoke movingly about his mental attitude dealing with ALS on a panel called “Firing Back from Adversity.” Thunderous ovation. Classmates are still talking about how moved and inspired they were.

June 2015: Harvard reunion fundraising results! The Stephen Winthrop ALS Fund at Harvard now stands at over $2 million, serving as the 1011seed money for the $25 million Harvard ALS Initiative.

August 2015: To help kick off the ALS Ice Bucket Challenge of 2015, Stephen and Jane appeared on local TV to speak with a morning newscaster and douse her! When she asked Stephen how all those ice bucket videos made him feel, he spontaneously quipped, “Actually, they make me feel very warm inside.” What a perfect sound byte, and so, so true.

September 2015: Stephen formed our Boston Walk to Defeat ALS team: WillWin Against ALS. His hopes are high but reasonable: he wants to raise the most money of any team. Please consider walking with us or sponsoring one of our walkers with a donation. The Boston walk is Saturday October 24, 2015, from 9:30-Noon. Maybe we will even win a prize for the most creative team T-shirts? Hmm. Better get working on that.