July 17, 2013
Board Members Present:
Kathy Osbun, Art Rosenblum, Davis Brown, Gloria Stubbs, Ann Walker, Sandy Grant, Arlene Irizary, George Irizary, David Getzoff, Barbara France and Marc Alexander, alternate board member.
Board Members Absent:
Karen Lovvorn, Dana May Casperson, Jim France, Suzanne deKozan and Phyllis Sands.
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 were approved with the following correction: The February 2014 speaker from the Buck Institute will be Dr. Julie Andersen.
In addition to the income and expenses cited in the Treasurer’s Report, additional income and expenses for July include: Income: $20 contribution from a friend of Kathy Osbun and $20 from sale of tulip pins. Expenses: $11 sales tax and $216.25 for the Quick Books Program.
After consultation with Linda Rosen, Sandy said that the unclaimed speakers fees should just be left in the budget as budgeted amounts and not converted to contributions by the speaker. Arlene said that she wanted to consult a CFO from a non-proﬁt group to see if there was a way to do this. Sandy said that Arlene should investigate further and discussion can continue at the next meeting.
Ann reminded members to take brochures for placement.
The New Member Packets from Parkinson’s Patient Support Group (PPSG) have not arrived yet. Gloria reported that the Data Base Committee did not meet.
Arlene reported that programs are scheduled into 2014. A 2014 date for Dr. Huang has yet to be decided. Marc Alexander is working to ﬁnd a representative from the area of Clinical Trials to provide a program and Dana May Casperson’s nephew, Lee Dibble, PT, PhD is a possible speaker as well.
Arlene asked about thoughts for the Christmas Party entertainment. She said that she had not heard from the River Choir but she did know that several members were involved in more caregiving and she did not know of their availability. Kathy asked if members had ideas for other groups to provide Christmas entertainment. The youth choir from the church and the Montgomery High School Choir were suggested. Gloria said that she was going to a program by a Fijian Choir soon and she would enquire about their availability.
Kathy said she had been contacted by Robert Levitt from Lee Silverman Physical Therapy-BIG about speaking to the group again. She said she felt that he had been there fairly recently and even though his program might be helpful to suitable patients we should present as wide a variety of speakers and approaches as possible. The speakers come to provide information to our members so that they can decide for themselves which, if any, programs ﬁt their needs. There was general agreement with this summation, Additionally board members felt that we should not have the appearance of “approving” of speciﬁc treatments or approaches and we must not be seen as promoting any businesses. We should provide information that will enable each PGSC member to make informed decisions for themselves. Arlene will write to Robert Levitt, thanking him for his continued interest in the group and tell him that we have speakers in our upcoming schedule in his ﬁeld and we are interested in providing as much variety in our programs as possible.
Efforts to ﬁnd specialist care for PD patients:
Dr Glass: Kathy contacted Dr. Glass directly about what went wrong with the efforts for his group to provide a clinic in association with NCMA. Dr. Glass said that Dr Kang had met with Ruth Skidmore and thought that they were on their way to making the clinic a reality. Then their group received an email from Ruth Skidmore saying that when the proposal was presented to the NCMA Board it was turned down. No reasons were stated but Dr. Glass assumed that the Board looked at the Medicare numbers and ﬁgured it wasn’t going to work and getting a PD specialist was not a priority for them.
At the June meeting it was generally agreed that trying to have patients from Santa Rosa get appointments and travel together to Dr. Zhang’s clinic at UC Davis was too difﬁcult for individual patients considering the time involved and too difﬁcult for the group to arrange. But this month Arlene received an email from Florence Murphy, the Nurse Practice Manager of the neurology Clinic at UCDMC saying that they are ready to start making arrangements as soon as possible to see PD patients from Santa Rosa. Arlene wrote back asking very speciﬁc questions and received very detailed answers from Florence Murphy. After discussion it was decided that PGSC should not become involved in arranging appointments or providing transportations but rather, the Board should present this information to PGSC members and each could act on it as it ﬁt their individual needs. Even though this does not meet our goal of providing specialist care locally this is a wonderful proposal for those who are unable to ﬁnd specialist care at present.
Kathy will announce the offer to the whole group at the August meeting. We will provide copies of the email from Florence Murphy. Arlene will check to be sure we have permission to use the emails.
It was suggested at the last meeting that Dana May follow up on earlier contacts with Sutter Medical Group. The person that Dana May had spoken to earlier is no longer with Sutter but Dana May wrote in an email that if the group wanted she would make further attempts to determine their interest in a clinic.
Marc brought information about a clinical trial by the Parkinson’s Progressive Marker Initiative who are backed by the Michael J. Fox Foundation. This particular trial is for the undiagnosed only. The PPMI hopes to ﬁnd bio markers for the progression of Parkinson’s Disease. One very early symptom is loss of sense of smell and this study hopes to provide questionnaires to 10,000 people. These questionnaires will be analyzed and people ﬁtting their criteria will be asked for further information and the winnowing out will continue through further rounds until they achieve a group of 100 people that they will follow over time to watch the development and progression of PD.
Marc has the questionnaire for the ﬁrst round of the survey and he proposes to provide one to everyone attending the August meeting. It was agreed that this was suitable and he will give a short introduction to the study.
Kathy received an email from a group member who is in desperate need of a spanish speaking care giver who qualiﬁes as a care giver under MediCal In Home Support Service. The member’s mother has atypical PD diagnosis. The member needs help desperately.
Davis suggested that we provide a box somewhere at our meetings where people can place their unwanted pill boxes that might be useful to other members.
The meeting was adjourned at 11:35 by Kathy Osbun. The next Board meeting will be August 21, 2013, at the Brush Creek Senior Living.
Barbara France, Recording Secretary.