I can't believe how time has flown by these last few weeks. In a nutshell, I've been travelling, a lot:
1.) WORLD Symposium 2/27 - 3/5 in San Diego a meeting of industry and researchers of a group of rare diseases known as lysosomal storage disorders;
2.) Mast Therapeutics Headquarters 3/3 just North of San Diego. Met with Company senior leadership. Mast is awaiting topline results from their Phase III trial of vepoloxamer. This was the largest trial ever conducted in SCD patients with VOC (vaso occlusive crises);
3.) Emmaus Pharmaceuticals Headquarters 3/4 Torrance, CA. Met with Company senior leadership. Emmaus is awaiting approval of their pharmaceutical grade L-glutamine for the management of patients with SCD;
4.) Sickle Cell Community Consortium 3/15 - 3/19 Atlanta, GA. This was the inaugural meeting of the SCCC a national umbrella organization on behalf of local CBOs from 17+ States and Canada that advocate for the SCD Community. I serve as Director of Development;
5.) PCORNET Trustworthiness Meeting 3/28 - 3/29 Washington D.C. This was a meeting of researchers and advocates in the area of comparative effectiveness. Networked and interacted with parties in position to conduct, host, or advise on the psychosocial research of the SCD community;
6.) 8th Annual Maryland Legislative SCD Awareness Event 4/5 Annapolis, MD. This meeting, coordinated by 5 MD area based SCD Community Based Organizations, updated the Maryland Senators and Delegates about the progress and concerns of the SCD community. Of note Senator Nathan-Pulliam, RN received a favorable vote for her legislation, SB 459. This will study the Cost Benefit of an Adult Sickle Cell Infusion Clinic. Recommendation due to the Governor by 12/1/16.