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PARKINSON NEWS

The following news articles are for the interest of our Parkinson's community.  PASB does not necessarily endorse any of the medicines, treatments or opinions mentioned in these articles.

Parkinson's Disease News

check out news from:

Parkinson's Disease Foundation

California Parkinson's Newsletter

 

michaeljfox.org

Parkinson’s 360 details different stories about people with PD in these online videos and the books are great for newly diagnosed patients and family members. (Complementary videos here)

 

The Trial Participant Pack seeks to demystify participation in clinical trials and empower participants to advocate for themselves. This is another great resource for providers to share with the community. (Complementary videos here, too.)

 

The Trial Resource Pack is the complementary resource and tool kit for researchers to optimize trial design with the participants in mind.

 

MJFF Blog and Third Thursday Webinars, cover a host of topics and are amazingly informative!

 

 

Research:

 

Fox Insight is an online, clinical study focused on patient reported data. There are currently over 18,000 participants and counting (myself included) and numerous sub-studies available to participants. Participants with PD can enroll in a genetics sub-study through 23andMe after completing their first Fox Insight survey

 

Fox Trial Finder is the platform hosted by MJFF, which we like to refer to as the “match.com” of trials and is how you can look for and be paired with PD clinical studies in your area or online

 

These two platforms are integrated, so you can participate in the Fox Insight study, while you wait for a study in the clinic that is a match for you on Fox Trial Finder!

 

 

Policy:

 

Action Alerts are a way to get involved in Parkinson’s related public policy

 

Policy Tool Kit enables the community to have the most impact possible when interacting with your members of Congress

 

 

Grassroots Fundraising:

 

Team Fox is the foundation's member led, grassroots fundraising program

 

 

Treatment Information for PD Symptoms:

 

We always suggest seeing a Movement Disorder Specialist when possible as they will have the most up to date info on current treatments for PD. You can also search newly approved and close to approval therapies on the MJFF website via the following links:

 

MJFF-Funded Therapies in Development: Disease ModifyingMotor SymptomsNon-motor Symptoms

 

Recently Approved Therapies

Available Medications: Motor SymptomsNon-motor Symptoms

 

For academic institutions interested in training Movement Disorder Specialists, you can apply for the The Edmond J. Safra Fellowship in Movement Disorders (December 19 deadline fast approaching!)

 

 

CA Community Member Topics of Interest:

 

Questions about the following topics were posed during my trip, for information regarding MJFF research grant funding you can also search MJFF funded research here:

 

Shake it Up Australia has a great article comparing Parkinson’s, Alzheimer’s and Lewy Body Dementia

 

Info about the first clinical trial in Parkinson’s disease using Induced Pluripotent Stem Cells (iPS)

 

While there isn’t a comprehensive list of causes of Parkinson’s disease, this article explains more about the complexities of attributing environmental causes of PD

 

The latest on Marijuana for PD from the MJFF on staff Movement Disorders Specialist. You may also find the article “What legal weed in Canada means for science” interesting, as it discusses the flood of funding to Canadian researchers and opportunities for breakthroughs in marijuana research with the full legalization in Canada.

 

PD Self is a program for newly diagnosed PwPD and carepartners focusing on self-efficacy. People interested in starting a group in Central California, can learn more here. TBD training date for 2019 is scheduled in April. No location has been announced yet.

 

RAISE Family Caregivers Act is being supported in congress, which should help to ease the burden for carepartners, but an interest was also expressed in training for carepartners, which might be within reach for any community organization or individual who wishes to utilize the training available through Caregiver Stress Busting to train others in the community.

 

Melvin Weinstein Parkinson’s Foundation provides grants for financial assistance, which you can read about here. You must apply with this paper form.

 

For prescription assistance Partnership for Prescription Assistance and Rx Assist might be helpful.

 

At the end of this article by Parkinson’s Life, there is a list of organizations to look into for training a PD service dog.

 

There are online and video exercise services for people with Parkinson’s for free, one time charge and subscription. Here is a list of the programs that I am familiar with, but there are certainly several more if you search online:

-, Brooklyn

-, Denver

-, Seattle

  •    offers The Daily Dose daily, live streamed and archived video workouts (free for the first 30 days, then a monthly subscription charge)

-, Los Angeles

  •    offers online video workouts (free and monthly subscription charge options)

-, Columbus

  •    offers exercise book/DVD sets (one time charge)

-, Austin

 

For more info, visit these Local PD Resource Centers:

 

Davis Phinney Foundation

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