CALL TO ORDER: The regular meeting of the Board of Directors of the Parkinson’s Support Group of Sonoma County was called to order by Chair/President Kathy Osbun at 10:08 a.m.
APPROVAL OF MINUTES: The minutes of the Board meeting of July 18, 2012, were approved as read.
ACKNOWLEDGEMENT OF DONATION: Kathy Osbun announced that a $400 donation was received from the Unitarian Universalist Congregation, Santa Rosa (UUCSR), after being selected for the contribution by the UUCSR Advocates for Social Justice Committee. Board member David Getzoff called for a vote of thanks to Board Secretary Art Rosenblum, who is also a member of the UUCSR, for nominating the PSGSC for the donation.
THANKS TO VINTAGE BRUSH CREEK: Board member Gloria Stubbs said a “thank you” to Vintage Brush Creek Senior Living is in order for their help in selling signature tulip pins in an ongoing PSGSC fund raiser. Correspondence Secretary George Irizary was instructed to write a letter to Vintage Brush Creek thanking them for the pin sales and for the monthly use of a conference room for monthly PSGSC Board meetings.
DISTRIBUTION OF BROCHURES: Board Member Ann Walker reported that 520 tri-color PSGSC brochures have been placed in various medical facilities and public places since she took on the tracking of the brochures in February.
AWARE IN CARE: Kathy Osbun reported that she has received two more boxes of Aware in Care kits from the National Parkinson’s Foundation (NPF). The kits are designed to bring attention to particular needs of Parkinson’s patients, especially medications and the timing of when medications are taken. Kathy noted that at the August general meeting one participant reported that the kit was extremely helpful during a hospital stay in another county.
SOUND SYSTEM: Phyllis Sands reported that Patrick Hardman is working with George Irizary to deal with the static-prone wireless sound system owned by PSGSC. Meanwhile, a professional built-in sound system is being provided by the group’s meeting place, Christ Church United Methodist. Efforts to repair the old system have not been successful. One option is to add “wireless” capability to a Yamaha speaker/amplifier that was purchased some time back in an effort to improve the older sound system.
PROGRAMS: Program Coordinator Arlene Irizary said she was pleasantly surprised by the large turnout (about 80 people) for the August 11 speaker, Robert Leavitt, the only person in Sonoma County certified for the Lee Silverman “Big” program, the physical and strength program for people with Parkinson’s.
Future speakers are: Oct. 6, neuropsychologist Lisa Grossman; and on Nov. 3, Dr. Graham (Alec) Glass, Parkinson’s Specialist at UCSF and VASF. The December 8 meeting will be a holiday party with the returning River Choir. Note that the December meeting/party will be on the SECOND SATURDAY, rather than on the first Saturday. No meeting is conducted in September.
BOTOX AVAILABLE: Dana May Casperson reported that Botox treatments are now available at UCSF. Barbara Stiling said the Botox treatments help Parkinson’s patients who are experiencing excessive saliva and drooling.
REDWOOD CAREGIVERS: Arlene Irizary reported that Redwood Caregivers Resource Center escaped State budget cuts and will soon have a new schedule of classes and programs for the fall and winter.
CLINICAL TRIALS: Kathy reported that members Steve Casperson and Joe Hootman are participating in clinical drug research programs and shared details at the August patients’ breakout group meeting. Dana May shared information about the clinical trials during the August Caregiver breakout meeting.
OTHER FORMS OF DISEASE: Davis Brown made a motion to explore what PSGSC can or should do for people with aggressive atypical forms of Parkinson’s. Kathy Osbun said people with any type of Parkinson’s are welcome at our meetings-- “We embrace them.” Arlene Irizary noted that we recently emailed to all members an announcement of a major conference on atypical Parkinsonism in Burlingame on Oct. 13, organized by Robin Riddle, Stanford University.
BRAINSTORMING OF UNMET NEEDS: Reflecting on a PSGSC Brainstorming Session on Unmet Needs conducted on March 30, 2010, Kathy Osbun summarized what’s been done since then on the following goals:
OUTREACH: Educate medical community on special needs of PD patients and formalize distribution of PSGSC brochures. Kathy said we have committees currently working on the education aspect and we distribute Aware in Care kits. Ann Walker monitors distribution of our newly-designed brochure. Kathy said we also have met a secondary goal of expanding our website coverage and keeping it current. Kathy is the point of contact person for the website.
ORGANIZATION: Assure compliance with IRS and State Attorney General’s Office regulations for non-profits, and upgrade financial recordkeeping. Kathy noted that we now have State and Federal non-profit status, and a Treasurer (Sandy Grant) who provides detailed monthly and annual financial statements. Secondary organization goals of recruiting volunteers for phone tree coordinator and recording secretary also have been accomplished. Regarding a third priority goal of obtaining a detailed plan and budget for a foundation and movement disorders clinic remains pending with Davis Brown saying “We need to coordinate it more.”
MEMBER SERVICES: Transportation for members, a resources list and an informational packet.for new members. Kathy said we still need to study transportation options, we are working on a resources list and we do have informational packets for new members.
INFORMATION AND REFERRAL: Davis Brown raised the question of whether PSGSC could set up a local information and referral service funded by the American Parkinson’s Disease Association. Davis indicated that he would call Robin Riddle, the APDA information and referral person at Stanford to see if his proposal is feasible.
ANONYMOUS DONOR: There was some discussion of the possibility of a significant donation by an unnamed philanthropist, but the donor wants to see a plan for how the money would be spent. That led into a discussion of the need for a movement disorders specialist, a doctor who has training above and beyond a neurologist in the treatment of Parkinson’s and other movement disorders.
MOVEMENT DISORDERS SPECIALIST: Dana May reported that with Sutter Hospital building a new facility, Sutter may be open to a Parkinson’s clinic or at least a movement disorders specialist. “I think we are making some progress in that direction,” Dana May said.
MEETING ADJOURNED: The meeting was adjourned at 12 p.m.by Kathy Osbun. The next meeting of the Board of Directors will be held at 10 a.m.. Wednesday, Sept. 19, 2012, at Brush Creek Senior Living off Hwy. 12 east of Brush Creek Road. The above minutes are subject to approval at the September Board meeting.