The California Parkinson's Newsletter - October 2018
NEWS
*All links below from Parkinson's News Today*
9/27/18: "Grape Skin Extract Has Beneficial Effect on Mitochondria in Flies With Parkinson’s"
9/26/18: "Lack of Exercise Increases Parkinson’s Risk in Men, Review Study Confirms"
9/19/18: "Study to Explore Art Therapy for Improving Visuospatial, Motor Function in Parkinson’s Patients"
9/19/18: "Dance Therapy May Help Improve Motor Function of Parkinson’s Patients, Pilot Study Reports"
9/18/18: "Restless Legs Syndrome Could Be Risk Factor for Parkinson’s, Study Suggests"
9/14/18: "ADHD Diagnosis Could Increase Risk for Parkinson’s, Study Suggests"
9/13/18: "Advantages and Difficulties of Telemedicine in Parkinson’s Analyzed in Review Study"
9/6/18: "Parkinson’s Subtypes Share Early Psychiatric Features, But Diverge as Disease Progresses, Study Suggests"
9/6/18: "Engineered Protein May Lead to New Parkinson’s Therapy, Preclinical Study Suggests"
9/5/18: "Tiny Vesicles Found in Blood Able to Carry Dopamine into Brains of Mice in Parkinson’s Study"
9/4/18: "Nanobodies Could Prevent Alpha-Synuclein’s Toxic Effects in Parkinson’s, Rat Study Suggests"
ADVOCACY & ACTION
San Diego area readers: Have you heard of the Davis Phinney Foundation's "Sidekicks"? This program pairs PWP with school children for activities like art making and story telling. The Foundation is looking for people with PD to participate in the program in the San Diego area. The four-session program takes place on Saturdays starting October 20.
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San Diego area readers: UCSD is recruiting PWP to be interviewed (45-90 minutes) for their views on stem cell clinical trials. This study will provide information for the eventual approval of stem cell trials.
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Please keep spreading the word about the California Parkinson's Registry!
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Please take a moment to complete this survey from the Parkinson Alliance: Non-Motor Symptoms and Parkinson’s Disease to help gather information from the patient perspective.
WEBINARS & PHONE CONFERENCES
THIS MONTH
Tue, 10/9, 10-11 am PT: PD@Home phone education and support conference from the VA's PADRECC. Call (800) 767-1750 and enter code 54321#.
Thu, 10/18: MJFF 'Third Thursday' webinar More Symptom Control: Treating Parkinson's "Off" Episodes
ONGOING
Wednesdays: NWPF's Live Streamed Yoga. Free online class led by a certified yoga instructor who is also a PWP.
Twice monthly, 1st & 3rd Wednesdays: PMDAlliance Online Happy Hour live, interactive social time with PMDAlliance ambassadors
**For more visit the archives of the Parkinson's Foundation's Expert Briefings, MJFF's Third Thursday Webinars, and NWPF's PD Education Hour.**
SoCal Events
KERN COUNTY
Sat, 10/20, Bakersfield: 2da Conferencia Interactiva de Parkinson para la Comunidad Latina (Second Parkinson's Interactive Conference for the Latino Community)
LOS ANGELES COUNTY
Thursdays 11 am, Pasadena: USC/Team Parkinson/ Parkinson's Foundation 5K weekly trainings @Rose Bowl, Lot K. Sarah Ingersoll (626) 796-4745, singerso@usc.edu
Thur, 10/11, Westwood: UCLA Brain Boot Camp. Join Twitchy Woman & Parkinson's Wellness Fund. Care partners welcome! Thanks to UCLA & the Meyrow Foundation, cost is discounted to $100/person. twitchywoman18@gmail.com
Sun, 10/21, Griffith Park: Parkinson's Foundation Moving Day Los Angeles
Wed, 10/24, 9 am, Westwood: UCLA Brain Boot Camp (see above, 10/11 listing)
Save the date:
Sun, 11/4, downtown L.A.: Parkinson Foundation's Hacia adelante: Navegando el mar del Parkinson Spanish-language PD conference
Tue, 11/13, Glendale: PMDAlliance's In Sync Support Group Leaders Conference
ORANGE COUNTY
Sat, 10/13, Irvine: UC Irvine Annual Parkinson's Symposium free education event
Sat, 10/20, Anaheim: 2da Conferencia Interactiva de Parkinson para la Comunidad Latina (Second Parkinson's Interactive Conference for the Latino Community)
Sat & Sun, 10/20-21, Irvine: APDA West Coast PD Educational Forum
Fri, 11/16, Irvine: PMDAlliance's Learn. Live. Connect. PD conference
SAN DIEGO
Sat, 10/6: PASD Annual Gala
Sat, 10/20, Escondido: Summit For Stem Cell Fall Hike
Mon, 10/22, Carlsbad: PASD's Good StartProgram
Sat, 11/3, Bonita: Parkinson Foundation's Hacia adelante: Navegando el mar del Parkinson Spanish-language PD conference
Fri, 11/30, San Diego: PASD's Empowerment for Parkinson's educational event
NorCal Events
ALL AREAS
Subscribe to Stanford's PD info mailing list
SAN MATEO COUNTY
Sun, 10/14, San Mateo: Michael J. Fox Foundation's Bay Area Fox Trot for Parkinson's Research fundraiser
RESEARCH/TRIALS/STUDIES
MJFF's "Trial Participant Pack"
PD Trials in CA on ClinicalTrials.gov:
View recruiting trials throughout California
View recruiting trials in the San Francisco area
View recruiting trials in the Los Angeles area
View recruiting trials in the San Diego area
Fox Trial Finder
PDTrialTracker.info
Parkinson's Association (San Diego)
Parkinson Study Group (PD clinical trials)
Neurosearch: current trials (Los Angeles)
Online resources
California Parkinson's Support Network
A comprehensive resource directory for California Parkinson's patients, families, & caregivers.
National PD orgs & resources
American Parkinson Disease Association (APDA)
education/care programs, research funding
Davis Phinney Foundation (DPF)
education/care programs
The MEYROW Foundation / Parkinson's Wellness Fund
The Parkinson’s Wellness Fund provides individuals with PD access to necessary services.
The Michael J. Fox Foundation for Parkinson's Research (MJFF)
research funding, education, advocacy and public policy. *Note: In 2016, the Parkinson's Action Network was integrated into MJFF.
The Parkinson Alliance
research funding
Parkinson's Foundation (PF)
education/care programs, research funding. *Note: In 2016, National Parkinson's Foundation & Parkinson's Disease Foundation merged to become PF.
International PD organizations
The Cure Parkinson's Trust
research funding
European Parkinson's Disease Association
education, care, awareness
Parkinson's UK
support, research, public policy
World Parkinson Coalition
collaboration among researchers, clinicians, patients
SoCal PD orgs & resources
Central Coast Parkinson Association (San Luis Obispo)
Dancing Through Parkinson's - Invertigo Dance Theatre (Los Angeles)
iParkinsons.com (online)
Music Mends Minds (Los Angeles)
The MEYROW Foundation
The NeuroCommunity Foundation (Los Angeles)
Neuroboxing (Los Angeles)
Parkinson Association Santa Barbara
Parkinson’s Association (San Diego/Orange)
Parkinson's Association of Orange County
Parkinson's Community Los Angeles
Parkinson’s and Movement Disorders Institute (Orange/Los Angeles)
Parkinson's Resource Organization (Riverside/Los Angeles/Orange)
Parkinson & Movement Disorder Alliance (based in Tucson, AZ with some programs in southern CA)
South Orange County Parkinson's Support Group
Southwest Parkinson's Disease Research, Education, & Clinical Center (PADRECC) (Los Angeles)
Summit For Stem Cell (San Diego)
Team Fox Young Professionals of Los Angeles
Team Parkinson (Los Angeles)
Tremble Clefs (Orange County)
Voice of Parkinson's events and newsletter [link sends a direct email] (Orange and Los Angeles counties)
SoCal PD Support Group listings
Los Angeles
Parkinson's Community Los Angeles
Parkinson's Resource Organization
Orange
Parkinson's Association Orange County
Parkinson's Resource Organization
Saddleback Church Parkinson's Support Group
South Orange County Parkinson's Support Group
Voice of Parkinson's weekly email with group listings [link sends a direct email]
Riverside
Parkinson's Resource Organization
Riverside Parkinson's Support Group
San Diego
Parkinson's Association
San Luis Obispo
Central Coast Parkinson Association
Santa Barbara
Parkinson Association Santa Barbara
FREQUENTLY USED ACRONYMS
APDA: American Parkinson Disease Association
CPDR: California Parkinson's Disease Registry
DBS: Deep Brain Stimulation (surgery)
DPF: Davis Phinney Foundation
FDA: Food and Drug Administration
LSVT: Lee Silverman Voice Therapy (vocal and physical therapy programs)
MDS: Movement Disorder Specialist (a neurologist with fellowship training in movement disorders)
MJFF: The Michael J. Fox Foundation for Parkinson's Research
NPF: National Parkinson's Foundation
NWPF: Northwest Parkinson's Foundation
PADRECC: Parkinson’s Disease Research, Education and Clinical Centers (part of the VA)
PASB: Parkinson's Association Santa Barbara
PASD: Parkinson's Association San Diego
PCLA: Parkinson's Community Los Angeles
PD: Parkinson's Disease
PF: Parkinson's Foundation
PMDAlliance: Parkinson & Movement Disorder Alliance
PWP: Person with Parkinson's
WPC: World Parkinson's Congress
ABOUT US
The California Parkinson's Newsletter is published by PD advocate Sarah King in Los Angeles, CA. For more PD resource information, visit our California Parkinson's Support Network (CalPD.info) website, maintained by PD advocate Sue Buff in San Francisco, CA. Together, we aim to reach the estimated 125,000* PD patients throughout CA to help manage the disease and provide hope for a cure. [*Estimate applies % of the US population in CA (~12%) to estimate of 1 million PD patients in the US]
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