Partners in Learning & Connection - PMD Alliance

Big pharma. The pharma bro. Media coverage of price gouging, and accusations of profits over people. Public perception of the pharmaceutical or medical device industry isn’t very sunny these days. When many people think about these industries, they think about rising costs, insurance coverage and side effects. We want to paint a fuller picture, and give thanks to our industry partners and their investments in education and learning. 

Did you know that the pharmaceutical and device industry invests millions of dollars each year into education and community-based events for people impacted by Parkinson’s and other movement disorders? In fact, the US stands out as a leader in disease education and information.  

If you know someone with another chronic condition, such as migraines or COPD, you are unlikely to find community-based educational events provided by clinician experts in which they take time to explain the disease in depth, help you prepare for the nuances of the disease and answer questions. Since being diagnosed with a chronic illness myself, I’ve been profoundly aware of the disparity between resources in my condition compared to Parkinson disease. The richness of services offered by PMD Alliance just does not exist in other disease states, and much of that can be traced back to funding. PMD Alliance’s Annual Partners invest in us, helping us offer robust services to you. Individual donations are essential in the support we provide, but without our Annual Partners’ investments and connections to researchers and clinicians, we would not be able to provide our suite of online and in-person programs.

We work very closely with our sponsors to refine and adapt their educational programs about medications to be interesting and fresh, with the hopes that you reach a deeper understanding of the disease process as well as a treatment options. We work together to find the best synergies to understand potential solutions to improve everyday life and empower people impacted by movement disorders to advocate for themselves. 

Thank you PMD Alliance Annual Partners, for helping deliver programs like Getting Real for care partners, In Sync Support Group Leader training, YOPD Connections, and even more to come in 2023! We see your investments in education and connection, and want the world to see you better, too. 

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One Comment

  • Diane Goldenring says:

    I love the PMD Alliance, and I try to watch as many talks by experts as I can. I have PD and osteoporosis, and I am 67 years old. Nearly three years into my diagnosis. I am a dental hygienist by profession with a Masters in Education. Yesterday, April 18, 2023, I watched the talk titled Prevent Fractures in People with PD. It seemed worthwhile given the two significant diagnosis that I have. Thankfully the speaker, Dr. Steven Cummings acknowledged at the beginning that he was invested in the drug involved in the Topaz study as it is an bisphosphonate. I know first hand the side effects of Fosamax, also a bisphosphonate, as I experienced terrible esophosgeal pain constantly for a year and a half. While I understand that Zoledronic Acid is given as an injection bypassing this problem, I know from dental hygiene experience that bisphosphonates can cause osteonecrosis of the jaw, a very serious and painful dying of bone in the jaw. When Dr. Cummings got to the part of his talk where describes how easy it is to take part in the study “never having to leave home”, he showed a selfie picture of his own mouth. Nurses are supposed to come into your house and evaluate the health of the tissues in your mouth with a photograph from a phone. There is NO WAY that a nurse has the expertise or the tools to adequately evaluate a person’s mouth health to participate in this study, especially in one’s home. You need x-rays, periodontal examinations, prior dental history etc etc. This can only happen by hygienists and dentists. Please consider these words of advise before enrolling in this flawed study. And I would urge PMD to more carefully vet presenters as honestly I have very serious concerns about this presentation. It certainly was not up to the usual PMD standard.

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