Meeting With Congressman Waxman's StaffDecember 03, 2008 by Bill Strong We had a very productive meeting about The SMA Treatment Acceleration Act with Congressman Henry Waxman's Regional Director, Lisa Pinto, yesterday. Unfortunately, Mr. Waxman had to head back to Washington early, so he was unable to meet with us, but nonetheless we left with a really positive feeling from the meeting with Ms. Pinto and we look forward to working closely with her towards gaining Congressman Waxman's support for the Act in the near future. All in all, we're very proud of ourselves and it was a good experience for both of us.
We'd like to thank Lisa Pinto for taking the time to meet with us and Congressman Henry Waxman for extending us the invitation. We really appreciated the opportunity to share our experience with SMA and our thoughts about the importance of The SMA Treatment Acceleration Act and how it would impact research into both SMA and many other diseases as well.
Gwendolyn did really well on the trip down and during the meeting, although we were a bit concerned that she had hit her limit when she started to melt in the waiting room before our meeting even began. It was a good thing the Congressman's business cards were stacked nicely on a table as we let Gwendolyn hold one and she instantly lit up, looking very professional as she waved it around. She seemed to love the shiny gold eagle and I think it's a sign that she's a Waxman supporter and fan of the political process!
Talk About It
Are You An SMA Carrier? Advocating for the Affordable Care Act: Gwendolyn's Story (Video) It Arrived!!! Let the Adventures Begin!
200k for sma news featured gwendolyn strong foundation fundraiser spinal muscular atrophy teamgsf gwendolyn sma tips parenting a child with disabilities sma awareness friends sponsor-a-mile development concerned acts of kindness birthday family hospitalization video chase community giving therapy sma treatment acceleration act holidays good things for gwendolynShow More
200k for sma news featured gwendolyn strong foundation fundraiser spinal muscular atrophy teamgsf gwendolyn sma tips parenting a child with disabilities sma awareness friends sponsor-a-mile development concerned acts of kindness birthday family hospitalization video chase community giving therapy sma treatment acceleration act holidays good things for gwendolyn travel g-tube doctor transportation research special outing power chair newly diagnosed 3rd birthday uncategorized health insurance daily care sma carrier screening photographer giveaway adapted toys grief sitting up unite for the cure clinical trial 2nd birthday smaheadlines.com hospice 1st birthday medi-calHide Tags
2017September (1) April (1) March (1) January (2)
2016December (1) November (1) October (1) September (2) August (2) July (1) June (1) May (1) April (2) February (2) January (4)
2015December (2) November (1) October (2) September (2) August (4) July (3) June (2) May (1) April (2) January (4)
2014November (3) October (3) September (3) August (3) July (3) May (1) April (1) March (5) February (2) January (2)
2013December (2) November (3) October (3) September (3) August (4) July (2) June (4) May (3) April (4) March (3) February (5) January (5)
2012December (3) November (8) October (4) September (5) August (8) July (7) June (8) May (8) April (9) March (7) February (9) January (9)
2011December (9) November (16) October (15) September (14) August (15) July (16) June (13) May (27) April (22) March (21) February (20) January (21)
2010December (19) November (22) October (16) September (23) August (23) July (27) June (24) May (24) April (21) March (26) February (19) January (24)
2009December (21) November (20) October (31) September (25) August (25) July (47) June (44) May (34) April (27) March (35) February (35) January (35)
2008December (37) November (22) October (31) September (20) August (30) July (27) June (18) May (5) April (6) March (3) February (1) January (2)
2007December (7) October (1)