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

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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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