MS Advocacy 101 - Identifying and Seizing Opportunities Questions
Hey everyone!
This forum is for any questions you may have for the amazing Cathy Chester, Brooke Pelczynski, Samantha Salvaggio Vanderman, and Joanna Bodner, who are joining us on our advocacy webinar.
If any questions are specific to one of the panelists, please include their name so they know to direct their attention there.
Thank you!! 🧡
When it comes to advocacy, I fight the feeling that posting about my story or my struggles is borderline complaining or whining about my situation or life with MS. At one point I had grown a good following and then shut it down after getting in my head so I am back to ground zero and feeling stuck to start over again. Have any of you fought that feeling and if so, what kept you continuing on your journey of advocacy?
I hate to hear the reason why you felt you needed to shut down sharing your story, but I do understand your reason why. I think the best thing to remember is that you're doing a great deed in helping to spread awareness to something that so many people don't know and understand. And who better than to tell that story than you! There is so much to learn from those living with the condition that others who are not living with it could benefit from knowing. And even for those who do share the same journey, there's so much reassurance in knowing their not alone. You're doing a great deed by spreading awareness and we need more like you to help make a difference. So I say all that to say, Get back to it! (lol) The world needs to hear your story and we'd love to support you! All the best, Latoya (Team Member)
How do i go about becoming and advocate to help people on their journey? I was diagnosed in 2008 and Been thru the gamut and have a lot of information for people newly diagnosed
I'm sorry to hear that you had such a long and exhausting road since your diagnosis in 2008. We certainly do learn a lot along the way with our firsthand experience. I'm not sure if you were able to attend this event last night, but the information on this page has some links that may be helpful, including links to see what other patient advocates are doing to maybe spark some ideas for you. I just wanted to make sure that you saw the replay of the advocacy discussion is now posted on the site here if you wanted to check it out, I've included the link below.
https://multiplesclerosis.net/event/advocacy-live-zoom?utm_confid=1f43e66cdd82159a026911b17576f44fd227e44b00c1da04a58261ae41bf4c7c&utm_source=ActiveCampaign&utm_medium=email&utm_content=%F0%9F%8E%A5%20Missed%20our%20live%20MS%20advocacy%20webinar%3F&utm_campaign=MultipleSclerosis%20net%20Webinar%20Recap
Hi, I helped start a weekly group that meets every Saturday. We have several artists and poets in our weekly meetings. One of the folks I started this group with does a pod cast and has interviewed some of the artists. She always asks for potential pod cast guests and I think Brooke Pelczynski would be a perfect guest if she is willing. Brooke, it seemed you struggled to name connecting your MS friends together when you know not what they, individually, do. I think it's called being a capable connector. The person I'm hoping to get you to be on her, KT's, podcast called it that.
that's fantastic work that you're doing in the MS community! Thanks for sharing and continuing to connect others in the community together.
- Alene, moderator
