I am a creative that finally ditched the corporate world (at the age of 44, now 45) to dedicate my life to using my creativity in whatever manner may come.
I really didn't have a choice at the time to stop working, due to my new muscle wasting diagnosis I also had what some may call Brain Fog came with it. My CEO self can no longer multi task, and organize like I used to. That has been the biggest issue for me, besides my muscle weakness. I choose to donate my time and profits to this cause, so that we can raise awareness and fund raise for more effective studies (for more effective treatments).
Understand that rare diseases don't get the attention needed because they are rare. My goal is to spread the word and increase funding one person at a time. I am blessed in my life, and I chose to bless others who are suffering from this disease too, with more options to manage this destructive muscle disease by way of fundraising. There are several muscle diseases that exists under the umbrella of Myositis. This is blanket term for all of the rare muscle wasting diseases that fall under this umbrella like Polymyositis, Dermatomyositis, Necrotizing Myopathy, Sporadic Inclusion Body Myositis, Juvenile Myositis . I have polymyositis, with some markers for Inclusion Body Myositis. Luckily I am responding to treatment, but if I didn't respond to treatment I would be diagnosed with sIBM soley. At this point, after trialing several medicines, I am finally under control with a wonderful treatment (but that will end in July, since it is so expensive [$4500.00 per infusion], and I must trial another medicine) and I am rebuilding my atrophied muscles. My body is filling back up and getting strong again, I feel great to be able to say that. Follow me, and join me in the cause. https://www.myositis.org/get-involved/fundraise/campaigns/lisa-javery-designs-myositis-fund/
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