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What type of advocacy are you currently involved in or hoping to be?

Our community would love to learn & hear more about your advocacy efforts. Join in on the conversation!

What type of advocacy are you currently involved in or hoping to be?
- Community Awareness & Education
- Legislative Advocacy
- Digital Creator
- Healthcare Collaborator
- Other (please provide details)

How did you get started?
How long have you been advocating?
What advice do you have for someone who is just starting off or wants to explore advocacy?
What else would you like to share about your advocacy experience(s)?

  1. I developed juvenile rheumatoid arthritis with accompanying inflammatory eye disease at age 11. That was 66 years ago. My disease moved on to become full-blown rheumatoid arthritis, with Sjögren’s syndrome and interstitial cystitis. Over time a number of joints developed osteoarthritis, requiring knee replacements and other surgeries. Along the way I developed low back pain syndrome and, recently, macular degeneration. In the course of my career I was diagnosed with a refractory depression related to bipolar disorder II. The depression lasted 13 years, until the right drugs came to market. Thirty-one years later I continue to take my meds, spurred on by the fact that 2 members of my family have committed suicide.

    Now that you know my diagnoses, let me tell you about me. In my thirties I became a nurse practitioner with a minor in education with the goal of helping others to learn how to cope with arthritis. I received a 2-year fellowship from the Arthritis Foundation. My approach has always been to foster a healthy approach to chronic illness self-care, ie, a “I am not an arthritic but rather a person with arthritis.” Management of arthritis requires a mix of medical diagnosis and treatment mixed with promotion of a healthy self image. Not easy. During my professional career I received a number of awards from the Arthritis Foundation for community education activities, which included multiple speaking engagements as well as a 3-day arthritis exposition that featured workshops, lectures, and exhibits showing various products to promote independence. I had to retire early because of my physical limitations, but I still want to share my knowledge and experience with others. I offered my services as a volunteer to the Arthritis Foundation several times in between surgeries, but have thus far received no response. I would like to see whether your group can use my services.

    1. Hi , we're glad you're here. understanding, compassion, empathy, knowledge and experience are prized in our communities. We're glad you're here. I wanted to mention our sister community - If you would like to know more about contributing, you can reach out to the team there at contact@ - Warmly, Donna (team member)

  2. , I am working a couple of pathways. First, I am moving my marketing project manager (primarily digital) into healthcare lobbying and political communications. This includes identifying legislative opportunities to propose new laws based on living with chronic conditions related to T2D. Also, I will be reaching out to pharma contacts to get into consulting opportunities. Right now I am working on three websites, a professional, a future NGO and a blog. Hopefully by late next week, all three will be launched.

    1. Wow this sounds amazing. Great job on all fronts. ~Racquel~ Social Health Network Moderator

  3. So far, my advocacy is to be a moderator within the MultipleSclerosis.NET Facebook community. I spend an hour or so a day aresponding to comments posted on Facebook, finding relevant articles from the wealth of our online Health-Union community and making cxonnectoins between people and information. i haven't shared my own story yet, and I am AMAZINGLY blocked when it comes to actually writing the blasted thing. I keep writing and then erasing and starting over. I think the way forward is to contact a member of my community and work on it with him or her by delivering and then revising the story with them. At least I hope so!
    Thanks for listening. Therry Neilsen-Steinhardt

    1. Awesome. Keep at it I know you will do well. ~Racquel~ Social Health Network Moderator

    2. I hear you. I have done that and still do, most often if it's something that I'm not happy with. I find reading other peoples articles, when I'm trying to put my own together, makes me feel inadequate. I close those.
      Write your article. Put the eraser away until you are finished. Then think of your audience. If you feel a need to tweak it, ask yourself, what is it that needs to be changed. Does what you are wanting to change make sense? Will it improve the article or are you self conscious about it? Be sure to give yourself credit for writing that article. For helping someone with your words, words that can help them.
      Those are things that helped me anyway.
      Health Union has had training in article writing before.
      Know that you aren't alone and I understand. Likely more than just me.
      ~Janet (moderator/

  4. I have been writing articles for the macular degeneration community for the past 3 years. A producer contracting with Webmd saw one of my articles about my life with geographic atrophy. They came to my home and filmed for 2 days. It will result in an educational video in 2024 about life with geographic atrophy. They were especially interested in how I adapt to life with vision loss. I completed the patient leader certification recently and I feel it helped me tell my story. Sharon Moore patient leader

    1. Wow congratulations. What a great accomplishment and I am sure great information will be shared with that project. I loved the Patient Leader Certification. It was o good to help with all that you are doing. Can't wait to hear more about this. ~Racquel~ Social Health Network Moderator

    2. this is amazing! Congrats on this opportunity and thank you for raising awareness for GA!

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