Board Members Present:
Art Rosenblum, David Getzoff, Jim France, Sandy Grant, Kathy Osbun, Gloria Stubbs, Dana May Casperson, Ann Walker and Barbara France.

Board Members Absent:
Suzanne deKozan, George Irizary, Arlene Irizary, Davis Brown, Karen Lovvorn and Phyllis Sands. Also absent alternate Board Member, Marc Alexander.

Guests Attending:

Ron and Colleen Trouse

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 10:05 a.m. by Chair/ President Kathy Osbun.

Approval of Minutes:
The minutes were approved with the following corrections: In two sections, Program and Efforts to find specialist care for PD patients, PSGSC is incorrectly identified as PGSC.

Under clinical Trials: David Getzoff suggested that “loss of ability to smell” should replace “loss of sense of smell” as an early symptom of Parkinson’s Disease.

Treasurer’s Report:
In addition to the income and expenses cited in the Treasurer’s Report, additional income and expenses for August include: Income of $308.30 from August meeting donation jar and $11.92 from tulip pins. Expenses of .54 sales tax and $11.96 Library expenses.

Fundraising:
Mary’s Pizza: October 9, 2013 will be the fundraising event at Mary’s Pizza on Summerfield Road. Since there will be no meeting in September, Kathy will have fliers at the October meeting as well as announcing it to the whole group.

Reminders will be included in the email announcing the October Meeting, and a separate email will be sent out the Monday (October 7) before the event on October 9 as a further reminder.


Tulip Pins: We have sold 151 of the original 300. Kathy thanked Dana May who brought the idea of the Tulip Pins before the Board. They have been quite popular with the group and new members seem particularly interested in them.

Data Base Update:
The original New Member Packets came from the Patient Support Group from the Sunnyvale Institute. We have received conflicting messages about whether or not they are going to continue to provide these and it has finally been determined that they will not be supplying anything that is useful to our purposes. Therefore, we will create our own. Gloria has started a collection of various materials that will be specific to our area.

There were 70 people at the August Meeting, including 9 new members.

Programs:
August speaker:
 Although we learned about the background of LSVT LOUD, it was unfortunate that the August speaker from the Swain Center did not have LSVT LOUD training and was unable to answer a few basic question asked about the program. Kathy Osbun had personal experience with her husband’s participation in the program and was able to give examples of how the program is run. Kathy was able to find out answers to specific questions asked by members attending. The cost is $85/hr and while some insurance complies cover the cost, Medicare does not. The Swain Center does offer a 15% discount to members of groups where they have made presentations.


Christmas Party: 
In Arlene’s absence, Kathy asked about the Fijian choir for the Christmas Party. Both Gloria and Dana May Casperson have contacts for them and they will contact them. The Christmas Party will be the 2nd Saturday in December and there is a $200 stipend for the group.


September Meeting:
 There will be no general meeting in September, but the Board will meet September 18.


October Meeting: 
Dr. Melanie Brandabur from the Parkinson’s Institute in Sunnyvale will speak about Living Well With Parkinson’s.


November Meeting: Susan Weigman, a Physical Therapist from Santa Rosa Memorial Hospital will speak on issues of balance.
Dr. Zhang:
Kathy presented Dr. Zhang’s offer to schedule and see patients from our area at his clinic at the August meeting. Sandy suggested that this same information be sent out in an email to the whole group so that those unable to attend the August meeting would have the information.

Clinical Trials:
There will be a Parkinson’s conference at UCLA in October which Marc Alexander will attend. He has been asked to provide some input to that group about the areas of most interest to patients. Anyone with suggestions should contact Marc.

Resignation:
Kathy announced that she had received a letter of resignation from Jim France. Sandy made the motion to accept Jim’s resignation and Gloria seconded the motion. A voice vote accepted the resignation. Kathy expressed regret that Jim was leaving the Board and thanked him for his time. 
Jim’s place on the Board will be filled by Marc Alexander, presently an alternate Board Member. Sandy moved that Marc Alexander be elected to the Board, Gloria seconded the motion. A voice vote approved the motion.

Other Business:
Attending PSGSC member, Ron Trouse suggested that the facilitator of the groups should present a topic for discussion in the break out groups. Kathy suggested that the facilitators might have a topic in mind only if there is difficulty in furthering discussion by the participants. The patient break out groups are roughly divided between the newly diagnosed and those who have been coping for a longer time. This often leads to one group being significantly larger than the second. The facilitator has the job of keeping the conversation moving along, and making sure that all group members who wish to contribute or ask questions are able to do so.

The Men’s Breakfast Group which meets on the 1st and 3rd Fridays has been slowly dwindling down to a very few. Kathy thought this could be mentioned at the break out sessions.

Adjournment:
The meeting was adjourned at 11:10 a.m. by Kathy Osbun. The next Board meeting will be September 18, 2013, at the Brush Creek Senior Living.

Respectfully submitted,
Barbara France, Recording Secretary

Minutes of the Board of Directors of the Parkinson’s Support Group of Sonoma County
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.

Finance:
Treasurer’s Report:
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.

Publicity:
Ann reminded members to take brochures for placement.

Data Base:
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.

Program:
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.

Clinical Trials:
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. 

Communications:
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.

Pill Boxes:
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.

Adjournment:
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.

Respectfully submitted,
Barbara France, Recording Secretary.