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Life of a Patient Advocate

April 2 – Part of “Welcome Committee” that greeted and congratulated Brett Parker for his accomplishment of completing 7 Marathons/7 days/ 7 Continents.  Brett serves on the Michael J Fox Foundation Patient Advisory Committee. He raised many $$ for the Charity.  His sacrifice will help me, and many in the PD Community.  I felt attending his return was personally necessary to demonstrate my gratitude for his sacrifice.

April 5 – The Board of CAP voted to approve funding a Research project being conducted in the promising area of Neurofeedback by Yale University. CAP will also be the primary source for the majority of the Study Volunteers. 

April 7 –  Wellness Expo - Over twenty-five presenters answered questions from nearly 300 People with Parkinson’s (PWP)and their families at this inaugural Program.   Presenters included various Researchers, Clinicians, Physical Therapist, and Exercise instructors.

The Faire was sponsored by CAP, and lead by a Committee Chaired by Allyson Kinney

April 9 – I was alerted by my wife that a Pharma related to PD was just identified by CNN as having been involved with a drug that may have induced a number of deaths.  I checked out the report and found the drug to be Nuplazid from Acadia Pharmaceuticals. Nuplazid (pimavanserin), has been approved for the treatment of Parkinson’s disease psychosis. Nuplazid is also in development for the treatment of dementia-related psychosis.  The FDA approval is accompanied by a “Black Box” warning.

Acadia has been very strong supporter of CT programs, for the purpose of educating PWP about their medication that addresses Hallucinations. Being “Parkinson’s Awareness Month” Acadia had been very visible within our community. 

I wanted to get out the word to any in our community about the Warning and sought advice from our local MDS and Agency leaders.  The PWP community was a bit alarmed, as this was the second incident that has been brought to our attention.  The Agency front was quiet, with sources advising me they were “looking into it”.

I decided to contact my local Acadia Rep. to seek some answers.  She was very responsive and gave me the company’s position. 

https://www.smarteranalyst.com/research-analysts/acadia-pharmaceuticals-acad-another-glimpse-nuplazid-safety-profile/  

She reached out to me several more times, to ensure I had all the information I needed to present a factual representation of the company’s position to continue distributing the medication.  Positions from Neutral authorities indicates Acadia had followed all the steps they were required from the FDA during, and post, Drug Approval.  

As a Patient Advocate, I want to protect our community through securing sound counsel from authorities that can present an unbiased explanation of the science, and any known risks or side effects.  The decision to accept the risk becomes that of the individual.

April 11 – Joe Kelley received a resource packet related to Parkinson’s Awareness Month from the MJFF Public Policy Department.  The packet was designed to help Advocacy Leaders secure PD supporters who would raise their voice, and approach their legislators on issues that would increase Research spending and services for PWP.  (for a complete list of desired Legislative requests, go to http://advocate.michaeljfox.org/?0)

Joe reached out to his State Representative Lezley Zupkus, who offered to present a proclamation to Joe and me, signed by the leadership of the Connecticut General Assembly, declaring April as “PARKINSON’S AWARENESS MONTH.

This was initially done in one of Chambers.  Rep. Zupkus was joined by about 9 other Representatives, several who offered support Post Presentation.  Additionally, CAP members Joseph Kelley and myself were individually recognized for our dedication and contributions in the battle with Parkinson’s. We were accompanied by about 20 Parkinson’s Supporters, that included CAP Board Members, and PWP Chapter members from all three CAP Chapters and Torrington.   This ceremony was later repeated on the floor of the General Assembly and received statewide media coverage.  Social Media outlets also lit up, based on social sharing by various CAP members.

April 13 & 14 – Attended Patient Advisory Meeting in NYC for Michael J Fox Foundation.

MJFF Research Team give an overview of latest advances, with emphasis on “Fox Targets”

  • Alpha-Synuclein ~ PPMI
  • LARK II
  • GBA
  • BioMarkers

MJFF seeks to get stronger participation in FOX Insight ~ Patient-Powered Research

MJFF releases “Navigating Clinical Trials” & “Accelerating Clinical Trials” post-April 14th Roundtable.   I served as one of the MJFF Patient Advisors chosen to author Forward to publication.

April 14th – (Post MJFF) I attended a fundraiser for local Special Needs Community.  I have attended this event annually as a guest of a donor.   I was presented a $1500 check for CAP at the event.

April 20 – CAP Member, Sarah Diaz agreed to lead a Multilingual “Introduction to Parkinson’s” Program, sponsored in part by Acadia Pharmaceuticals, and a generous in Waterbury, CT.  She was joined by Dr. Maria DeLeon, a prominent multi-lingual PD Blogger. Pleased with 20 participants.

April 19 & 20 – Accepted the role of spokesperson for a Program rollout by Acorda Pharmaceuticals called “Live Well Do Tell”.  The program hopes to spirit greater communication amongst PWP and their clinician related to open and honest communications that will help surface causes and severity of Off periods in the life of a person with PWP.

Participated in a “Brain Faire” in Los Angeles proceeding the AAN Annual Conference.  Participation included a Facebook Live taping.

Acorda creates a “Needs assessment” to assist PWP with their visits.

http://livewelldotell.org/about/

April 27th & 28  – Unity Walk

Attend Pre-Walk reception hosted by Parkinson’s Alliance, as 2017 The Alan Bonander Humanitarian Award Co-Recipient.

Attend Walk as a member of CT Advocates for Parkinson’s team.

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