- Ataxia and Me
A positive year of Ataxia Awareness
Wow, what a year of positive awareness.
As International Ataxia Awareness Day = 25th September, 25 is the magic number!
In part 2 of this blog, we continue to note (in a diary type of format) some of the many opportunities we have been asked to attend, have a display or make a presentation.
First outing of Ataxia awareness after the social media frenzy of Rare disease Day, was a trip to the Eyeforpharma conference in Barcelona (where Ataxia and me, were included in the Im-patient team, of organisers, and moderated a round table workshop) at this 2000 delegate conference.
A couple of weeks later (25th March = 25 is the magic number!) it was off to Las Vegas to speak at the National Ataxia Foundation conference (once on the main stage and once in a workshop on Global Ataxia patient advocacy). It was, also a great opportunity to announce the position of our new media coordinator (DRUM ROLL..) Beth Soden. (Beth`s “Ataxia aware” project warrants a blog post, on its own. Keep an eye open for that instalment soon).
Returning home it was good to have a display at Pembrokeshire College, as part of the Enterprise event, a great opportunity for Ataxia awareness direct with the enterprising attendees.
A few weeks of working from HQ (the spare room) with a sprinkling of webinars for patient involvement, rare disease + research
Then off to Sheffield to attend the Research into the Cerebellum and Ataxias conference.
Back home for a #WhyDoWeDoResearch tweetChat and Brain INVOLVE meeting, and off to Richmond (London) for a presentation at a #medcomms workshop.
More webinar interaction followed !
Attendance at the P-CNS conference in Birmingham was a great event to talk with some of the primary care in Health professionals (we even had a flyer insert in the event delegate pack)
With Ataxia and Me, Ataxia-aware, display at the Great Hall, Swansea University, for the Mediwales NHS Wales event this was also a great opportunity to network directly with the NHS in Wales. Plus show off our new Charity registration Charitable Incorporated Organisation (CIO) 1184030 (and the publication of an article by Beth, in the mediwales “Life Stories” health Science magazine !).
A few more webinars and local meetings, over the next few weeks before #TeamAtaxia took part in the Super Hero Tri event in Dorney Park, Windsor – A fun and fundraising event (all dressed as Super Heroes - #TeamAtaxia had 11 entrants ages 9 months to 50+ years, on foot, bike, tricycle, pushchair and racing wheelchair). The event was televised and broadcast on Channel 4, hosted by Clare Balding!
Another display at Pembrokeshire college as part of marking Social Enterprise week, before flying to San Diego to the conference (where we sit on the Global Patient Leadership council https://globalgenes.org/rare-gal/).
Back home to for attendance and have a stand at the Cambridge Rare Disease Network event at the Welcome Genome Campus in Cambridge (https://camraredisease.org/)
This leads us nicely up to International Ataxia Awareness Day #IAAD (25th September. (mentions on Social Media of Ataxia and Me were many)
“25 is the magic number”
Scott Armit, who kindly showed his support by writing a blog post for us back in August this year has an update on his clinical trial. Scott says:
'Hi everyone, just an update for you regarding the drug I mentioned in my blog. Results came out last week from Reata pharmaceuticals and they look pretty great! I don’t want to mislead anyone firstly, this isn’t a cure. It could however potentially be the first-ever therapeutic drug for friedreichs ataxia! Which is absolutely massive, and seems to stop it progressing. Hopefully, this gives everyone out there as much hope as it’s given me. Over the course of the last year and a half on the trial drug, not only have I personally not deteriorated at all, some things have even improved. My handwriting has massively improved to the stage I can join letters and write full sentences again. I just hope the drug does get approved following a successful trial. If anyone has any questions or anything I can help them with my personal Twitter, please ask away.'
We are very proud that, as a small patient organisation, we get these amazing opportunities to be involved in the whole medical / health arena. This will benefit the Ataxia / Rare disease patient community.
If you would also like to get involved and share your experience with Ataxia or other rare conditions, please get into contact with us through our social media linked below:
Twitter: @Ataxia_and_Me
Instagram: @Ataxia_and_Me
Facebook: https://www.facebook.com/AtaxiaandMe/
Website www.ataxia-and-me.org (under construction)
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