Y’all this is insanity. I am humbled to be accepted to represent the ALS community on a global stage, and Perth, Australia is just going to be mindblowingly beautiful. Click HERE to hear from our fearless leader, Cathy, about the Patient Fellows Program and the importance of having patient voices represented at this symposium.
Scotland brought our advocacy efforts to a whole other level. Connecting with leading Scientist and Researchers from around the world makes one feel really dumb and really hopeful all in the same beat. Of course, as always, my first concern is will they have Dr. Pepper?
“People living with MND, their carers and families are at the heart of everything we do, and our reason for organising the Symposium every year. Whilst the event is aimed primarily at scientists and healthcare professional, there is an opportunity for people with MND to attend, via the Patient fellows programme managed by the ALS Therapeutic Development Institute (ALSTDI). This allows some people with MND to be funded to attend the Symposium and then share their experiences via an article or social media.” https://symposium.mndassociation.org/symposium-live/
Here is my interview from last year’s symposium in Glasgow, Scotland. As I type this I realize that I never posted my breakout of the sessions I attended last year – I’ll blast that out on Friday. Notice the gorgeous goose egg on my forehead and scratches from trying to break my fall – thankfully no concussion, whoo!
As exciting as this opportunity is, it’s also terrifying to think of flying to the other side of the world. These trips come with a lot of out of pocket costs – like airfare, hotel stay outside of the symposium, misc. travel expenses, etc. – so we are graciously asking for support from our friends and family to help offset the financial side of this work. Please use the link below to donate towards this experience. We are anticipating this trip to be in the $6,000 ballpark for our out of pocket costs for myself and a caregiver. The Fellowship comes with accommodations, meals, conference registration, and some other benefits but the bulk of the trip falls on us. Please do not hesitate to reach out with any questions or advice, everything we do is for the greater good of the ALS Community.
These trips come with a lot of out of pocket costs - like airfare, hotel stay outside of the symposium, misc. travel expenses, etc. - so we are graciously asking for support from our friends and family to help offset the financial side of this work. We appreciate any support you're able and willing to provide. We love each of you very, vert much for your continued support of our patient advocacy efforts.