Board Members Present:
Sandy Grant, Kathy Osbun, Gloria Stubbs, Art Rosenblum, Ann Walker, George Irizary, Arlene Irizary, Marc Alexander, David Getzoff, Dana May Casperson, Suzanne deKozan, Davis Brown and Barbara France
Board Members Absent:
Karen Lovvorn and Phyllis Sands
Guests:
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 10:10 a.m. by Chair/ President Kathy Osbun.
Approval of Minutes:
The minutes were approved with the following correction:
Under “August Speaker” the word companies was misspelled. Susan Wiegman’s name was also misspelled. (Weigman should be Wiegman)
Treasurer’s Report:
In addition to the income and expenses cited in the Treasurer’s Report we sold 4 tulip pins. As there was no meeting in August we had no donation jar income.
Finances:
PANC:
Parkinson’s Association of Northern California (PANC): This group is at present the umbrella for our insurance for meetings. They are in the process of reorganizing and are asking for memberships from Support Groups as well as individuals. In the past PSGSC has made a donation in addition to our $150 group membership. The question is do we make a donation in addition to our membership fee.
After discussion it was decided that we should pay our membership fee of $150 and wait to hear from George who will inquire whether they will be providing insurance in 2014 to decide about a further donation.
Sandy made the motion that we should pay $150 dues to PANC from PSGSC, Art seconded the motion which was passed with a voice vote.
A second PANC consideration is any Board action concerning individual memberships. Since PANC has been and could be a valuable resource to the Parkinson’s Community we should encourage PSGSC members to join as individuals.
There will be an email blast to members, Kathy will announce it at the October meeting and there will be copies of the membership form available at the meeting.
Fundraising:
Mary’s Pizza: October 9, 2013. There will be an email reminder to PSGSC members which will include the coupon. Kathy will announce it at the October meeting and there will be copies of the coupon available. Another email will go out on Monday, October 7. There will be a sign-up sheet at the meeting for members who want to lunch together.
Our income from this fundraiser has diminished over the time we have participated in this. It was pointed out that people are more eager to participate in fundraisers where there is an obvious project for the funds raised. In the coming year we could look into having a focused plan for further fundraising efforts.
Library:
Ann, Kathy and Arlene went through the entire Library and eliminated quite a few books because they were outdated. Some were outdated but still had some good information. It was decided that these books would be put out on the free table for anyone to take, In the future Ann will decide when books are out of date and put them out on the free table.
Art suggested that we increase our budget for Library Books since one of our main aims as a group is to provide further education for PSGSC members. In order to find new literature on PD we need to stay abreast of what is being published that might be useful to our group. Marc and Suzanne are going to the upcoming World Conference on Parkinson’s where the publishers will have displays of their latest books. This, in addition to what they learn from the speakers will be a good source from which to increase our library offerings. Ann will email Marc and Suzanne a list of the titles of our latest acquisitions so they can look for new materials.
Data Base Update:
Gloria and Kathy have begun to compile a New Member Packet that will be specific to our area, so far the packet includes:
Welcome Letter, PSGSC brochure, Redwood Care Givers brochure, Information sheet “Parkinson’s Disease, the Basics,” a PD Glossary including medical terms and meds), a contra indicated drugs sheet, a list of Sonoma County support groups with contact numbers and the PANC list of web site resources, Information for caring for PD patients, A tip sheet for making life easier with PD, Recommendations for swallowing problems and a sheet from Redwood Caregivers with ideas for hiring home help.
This is an early compilation and will be added to with information that Dr. Brandabur might bring to the October meeting.
These various sheets and brochures will be put in a large envelope and given to new members. The Board agreed that this was a comprehensive collection of materials and many present members might also benefit from it. It was decided that we would print 200 copies of the materials and buy the envelops from a low cost source. Dana May will bring sample clear labels for the envelops. Final decision will then be made at the October Board meeting.
Program:
Arlene reported the we have a tentative program schedule through May 2014.
Break out sessions:
Every meeting break out sessions are different but Kathy suggested that facilitators have a topic for discussion, just in case the group doesn’t have a direction. Arlene suggested that we might hire a facilitator with a small stipend. At a PANC seminar suggested such a course of action. Sandy said she would discuss this with Dorothy Foster at Redwood Caregivers. The facilitator should have PD knowledge. How to divide the groups remains an on going issue. Dividing between newly diagnosed seems to make the disparity in size of groups larger. Also the larger area with more chairs set out draws more people than the second smaller room. We will try setting out fewer chairs in the larger meeting room and have the facilitator of the group meeting in the smaller room help direct people to that room at the end of break. We will continue to rethink this issue.
Revisiting Sutter:
Dana May reported that she has had no response from Ruth Skidmore CEO of NICMA as yet. She will keep trying to find a way to open the discussion about bringing a Movements Disorders Specialist to the area.
Clinical Trials:
Sandy sent out an email blast on the Smell Trial being conducted by Parkinson’s Progression Markers Initiative. Kathy filled out the initial survey and received a scratch and smell survey. She said the test took about 15 minutes to complete.
Marc reported the Parkinson’s Foundation is focusing on the progression of the PD. Since it costs about one billion dollars to get a drug from idea to the counter and a large part of this cost is in the trials, they want to be able to use as few as possible trial members to get reliable trial results. To this end, research effort is going into discovering markers that might identify the stages of the disease and there by be able to target their trial members more accurately.
Adjournment:
The meeting was adjourned at 12:00 p.m. by Kathy Osbun. The next Board meeting will be October 16, 2013 at 10 a.m. at the Brush Creek Senior Living.
Respectfully submitted,
Barbara France,
Recording Secretary
Sandy Grant, Kathy Osbun, Gloria Stubbs, Art Rosenblum, Ann Walker, George Irizary, Arlene Irizary, Marc Alexander, David Getzoff, Dana May Casperson, Suzanne deKozan, Davis Brown and Barbara France
Board Members Absent:
Karen Lovvorn and Phyllis Sands
Guests:
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 10:10 a.m. by Chair/ President Kathy Osbun.
Approval of Minutes:
The minutes were approved with the following correction:
Under “August Speaker” the word companies was misspelled. Susan Wiegman’s name was also misspelled. (Weigman should be Wiegman)
Treasurer’s Report:
In addition to the income and expenses cited in the Treasurer’s Report we sold 4 tulip pins. As there was no meeting in August we had no donation jar income.
Finances:
PANC:
Parkinson’s Association of Northern California (PANC): This group is at present the umbrella for our insurance for meetings. They are in the process of reorganizing and are asking for memberships from Support Groups as well as individuals. In the past PSGSC has made a donation in addition to our $150 group membership. The question is do we make a donation in addition to our membership fee.
After discussion it was decided that we should pay our membership fee of $150 and wait to hear from George who will inquire whether they will be providing insurance in 2014 to decide about a further donation.
Sandy made the motion that we should pay $150 dues to PANC from PSGSC, Art seconded the motion which was passed with a voice vote.
A second PANC consideration is any Board action concerning individual memberships. Since PANC has been and could be a valuable resource to the Parkinson’s Community we should encourage PSGSC members to join as individuals.
There will be an email blast to members, Kathy will announce it at the October meeting and there will be copies of the membership form available at the meeting.
Fundraising:
Mary’s Pizza: October 9, 2013. There will be an email reminder to PSGSC members which will include the coupon. Kathy will announce it at the October meeting and there will be copies of the coupon available. Another email will go out on Monday, October 7. There will be a sign-up sheet at the meeting for members who want to lunch together.
Our income from this fundraiser has diminished over the time we have participated in this. It was pointed out that people are more eager to participate in fundraisers where there is an obvious project for the funds raised. In the coming year we could look into having a focused plan for further fundraising efforts.
Library:
Ann, Kathy and Arlene went through the entire Library and eliminated quite a few books because they were outdated. Some were outdated but still had some good information. It was decided that these books would be put out on the free table for anyone to take, In the future Ann will decide when books are out of date and put them out on the free table.
Art suggested that we increase our budget for Library Books since one of our main aims as a group is to provide further education for PSGSC members. In order to find new literature on PD we need to stay abreast of what is being published that might be useful to our group. Marc and Suzanne are going to the upcoming World Conference on Parkinson’s where the publishers will have displays of their latest books. This, in addition to what they learn from the speakers will be a good source from which to increase our library offerings. Ann will email Marc and Suzanne a list of the titles of our latest acquisitions so they can look for new materials.
Data Base Update:
Gloria and Kathy have begun to compile a New Member Packet that will be specific to our area, so far the packet includes:
Welcome Letter, PSGSC brochure, Redwood Care Givers brochure, Information sheet “Parkinson’s Disease, the Basics,” a PD Glossary including medical terms and meds), a contra indicated drugs sheet, a list of Sonoma County support groups with contact numbers and the PANC list of web site resources, Information for caring for PD patients, A tip sheet for making life easier with PD, Recommendations for swallowing problems and a sheet from Redwood Caregivers with ideas for hiring home help.
This is an early compilation and will be added to with information that Dr. Brandabur might bring to the October meeting.
These various sheets and brochures will be put in a large envelope and given to new members. The Board agreed that this was a comprehensive collection of materials and many present members might also benefit from it. It was decided that we would print 200 copies of the materials and buy the envelops from a low cost source. Dana May will bring sample clear labels for the envelops. Final decision will then be made at the October Board meeting.
Program:
Arlene reported the we have a tentative program schedule through May 2014.
- October 5 2013: Dr Melanie Brandabur, “Living Well With Parkinson’s” Arlene suggested that since Dr Brandabur usually prompts so many questions, we might skip the break out sessions in order that more people are able to ask questions.
- November 2, 2013: Susan Wiegman, PT from Memorial Hospital
- December 14, 2013: Holiday Party with foods to share and holiday music by Taina & the Fijian Choir.
- January 2014: No meeting
- February 1, 2014: Dr Julie Andersen, Buck Institute.
- March 1, 2013 Robert Leavitt, PT
- April 5, 2014: Megan Bowers, RN, Clinical Trials Coordinator for the Buck Institute.
- May 3, 2014: Lee Dibble, Ph.D, PT
Break out sessions:
Every meeting break out sessions are different but Kathy suggested that facilitators have a topic for discussion, just in case the group doesn’t have a direction. Arlene suggested that we might hire a facilitator with a small stipend. At a PANC seminar suggested such a course of action. Sandy said she would discuss this with Dorothy Foster at Redwood Caregivers. The facilitator should have PD knowledge. How to divide the groups remains an on going issue. Dividing between newly diagnosed seems to make the disparity in size of groups larger. Also the larger area with more chairs set out draws more people than the second smaller room. We will try setting out fewer chairs in the larger meeting room and have the facilitator of the group meeting in the smaller room help direct people to that room at the end of break. We will continue to rethink this issue.
Revisiting Sutter:
Dana May reported that she has had no response from Ruth Skidmore CEO of NICMA as yet. She will keep trying to find a way to open the discussion about bringing a Movements Disorders Specialist to the area.
Clinical Trials:
Sandy sent out an email blast on the Smell Trial being conducted by Parkinson’s Progression Markers Initiative. Kathy filled out the initial survey and received a scratch and smell survey. She said the test took about 15 minutes to complete.
Marc reported the Parkinson’s Foundation is focusing on the progression of the PD. Since it costs about one billion dollars to get a drug from idea to the counter and a large part of this cost is in the trials, they want to be able to use as few as possible trial members to get reliable trial results. To this end, research effort is going into discovering markers that might identify the stages of the disease and there by be able to target their trial members more accurately.
Adjournment:
The meeting was adjourned at 12:00 p.m. by Kathy Osbun. The next Board meeting will be October 16, 2013 at 10 a.m. at the Brush Creek Senior Living.
Respectfully submitted,
Barbara France,
Recording Secretary
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