|Sherrie Gould, Scripps Health photo|
“We are both confused and disappointed that this PUBLIC (Gould’s capitalization) meeting has been essentially cancelled. We were prepared to talk with the ICOC (the agency board) and answer all questions about our patient advocacy movement (Summit4stemcells) and our research….
“Unless we can be present in front of the CIRM board, Summit's strong voice is diminished. Being physically present in human form is always more effective than a teleconference. Delays, which we realize are a part of any government associated agency, are devastating to people suffering from the progressive symptoms of Parkinson's disease.”
“CIRM has rather pulled the rug out from under the patient advocates. These meetings are supposed to be public, so how is the public going to participate if there is no access?…. I'm disappointed and the Parkinson's patients are exceedingly disappointed. The Parkinson's group is trying to find out the resolution, if any, of the timing of the grant applications.”
“The reason we switched from an in-person to a teleconference board meeting is simple, the agenda for this meeting consisted of just a few items that could probably be handled in one hour. We can’t justify the cost of an in-person meeting in San Diego – which includes transportation for all those going there, plus hotel rooms, meals and the cost of the ballroom for the day - for one hour’s worth of business. As a state agency we are always mindful of how we spend our money so we made the change.”
“It’s tough, it’s really tough, to be involved in the Parkinson’s community, especially to have Parkinson’s disease, and to watch things go in what seems like slow motion.”
“In my year at CIRM I have only encountered enthusiasm and support for patient advocacy - both from the staff as well as the board. Patient and patient advocate participation in the process is welcomed. CIRM is first and foremost about patients.”
(The text of remarks by the various parties follow this item.)