of the Parkinson’s Support Group of Sonoma County June 19, 2013
Board Members Present:
Kathy Osbun, Art Rosenblum, Gloria Stubbs, Suzanne deKozan, George Irizary, Arlene Irizary, Karen Lovvorn, Ann Walker, Davis Brown, Barbara France and Marc Alexander, alternate board member.
Board Members Absent:
Sandy Grant, Jim France, Phyllis Sands, Dana May Casperson and David Getzoff.
Call to Order:
The regular meeting of the Board of Directors of the Parkinson’s Support Group of Sonoma County (PSGSC) was called to order at 10:10 a.m. by Chair/ President, Kathy Osbun.
Approval of Minutes:
The minutes of May 15, 2013 were approved with a correction submitted by Ann Walker. The Teva representative donated ten copies of Understanding Parkinson’s - A Self Help Guide by Cram M.D., Gao M.D. and Schecter M. D. rather than 100 Questions and Answers About Parkinson’s Disease.
In Sandy’s absence, Kathy gave Sandy’s monthly update. In addition to the income and expenses cited in the Treasurer’s Report additional income and expenses for June include:
Income: $268.00 donation jar, $185 from Paul Konstantinow Memorial and Interest $1.
Expenses: $100 for June rent, $77.90 for four library books, $18.68 for tapes and $32.08 for printing copies for April meeting.
New Print Outs of Treasurer’s Reports:
With the new Quick Books software Sandy is able to send email copies directly from the software but each report must be sent separately. Kathy wanted ￼opinions of how this new method was being received. It was generally felt that receiving the reports separately was not a problem and the larger print was helpful. Also it was felt that the report showing the monthly balances against the yearly budget was not particularly relevant although it did demonstrate some interesting points.
This discussion pointed up the fact that only one speaker had accepted the $100 stipend. This raises the question of how the unfunded fee should be reflected in the budget. To this point it has just been left as unused but perhaps the fee should be reflected as a contribution to PSGSC from the speaker. Kathy will ask Sandy to look into this.
Kathy asked for a discussion about where our focus should be. We have the survey results from last year and we seem to be making efforts in all the areas of most interest according to the survey. The number one issue cited was bringing a Movements Disorder specialist to the area. A great deal of effort has been put into this but it remains an elusive goal.
The latest effort which had Dr. Glass trying to bring specialists to Santa Rosa in cooperation with NCMA has seemingly come to an end. Ruth Skidmore from NCMA had informed Kathy that they would not be able to provide space because the billing and scheduling was not workable. Dr. Glass’s group would want to come, see patients and leave. They do not want to be involved with billing and scheduling. Ruth suggested contacting Sutter Medical Group of the Redwoods or the Annadale Medical Group for help in achieving this goal.
After discussion, consensus was that working on group trips to Davis to see Dr. Zhang would be a very difficult process and a wearying trip for all involved due to the amount of travel and waiting time involved. Kathy will speak again with Ruth Skidmore to try to get a clearer picture of the problems involved with supporting a clinic.
The focus of the group continues to be educational, with speakers at the meetings as well as an expanding library and the on going effort to bring a Movements Disorder specialist to the area.
Ann reported that she has found a source and has ordered library envelops and cards for the library books.
￼Gloria said that there were 49 in attendance at the May meeting, with 3 new people.
Gloria asked that in the data base that the names of spouses be listed separately rather than just husband or wife. Art will make that change.
New Member Packets:
Kathy received notice that the New Member Packets that she had ordered are on their way. This, despite the fact that she had been told they no longer existed. When they arrive they will be used to augment our brochure for new members.
There will be no meeting in July. The Swain Center will present a program at the August meeting. There will be no meeting in September. In October we will have Melanie Brandabur M.D., Clinical Directo r/ Movements Disorder Specialist from the Parkinson’s Institute of Sunnyvale. Susan from the Memorial Hospital Neuro Rehabilitation Unit will speak in November and the December meeting will be the annual Christmas Party. We will have a speaker from the Buck Institute in February and Dr. Huang will speak in the new year as well.
Marc Alexander has been learning about Clinical Trials in the area of Parkinson’s Disease and suggests that the group become involved in learning about Clinical Trials on an ongoing basis as a part of our educational outreach activities.
Parkinson’s patients are the consumers of these trials so it is in our best interest to participate when possible. Marc noted that it takes about thirty years to get a new drug on the market and half of that time is spent in trials. Often trials are delayed due to lack of participants.
The Board felt that this was an important area and we should look into how to get as much information as possible to members. It would be very helpful to have a speaker on Clinical Trials to familiarize members with the area and answer questions. As well, there are several “clearing house” sites that give information about ongoing trials and Marc will gather this information so that it can be added to our website.
Health Care Provider Letter:
￼Kathy read Suzanne’s revision of the Health Care Provider Letter. The board then made further revisions and clarifications. Suzanne will rewrite with these edits included. The next issue is to whom should these letters be addressed. Suzanne will find the hierarchy of the various hospitals and Health Care organizations in the area. It was felt that the letters should go to several people in each organization in order to have the greatest effect.
The meeting was adjourned at 12:10 by Kathy Osbun. The next board meeting will be July 18, 2013 at 10 a.m. at Brush Creek Senior Living.
Barbara France, Recording Secretary