365 days of Ataxia Awareness (part 1)
Founder of Ataxia and Me, Alan Thomas, reflects on the last few weeks of his campaign to increase Ataxia awareness.
Wow, what a year of positive awareness,
We are proud to be included in many events within Wales, Uk and Global.
As I, and many say, “the patient is the expert in their own condition”.
In this 2-part blog, we 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.
After a meeting at the Brain Unit Wales research centre in Cardiff in was off to Heathrow to fly to California for the Global Genes Rare disease Patient summit (where I was able to represent the Ataxia patient at a Global Level with other worldwide patient group leaders).
After a few weeks, of local meetings and social media input attendance was required at the Eyeforpharma https://www.eyeforpharma.com/patient/ patient summit in London, a Ataxia patient group display at Rare disease UK Forum meeting in Cardiff, plus a display at Wales Gene Park Rare disease Network meeting, also in Cardiff.
A few busy days of social media interaction, local research events and webinars, plus a trip to Barcelona to attend the World Orphan Drug Congress, where we also had our patient adventure poster on display, in the patient alliance zone. Additionally we could announce our Charity Friend status with the Superhero Tri (fun and fundraising event “Winter Wonderwheels”.
Returning back to the UK, to catch up with Rare disease patient group colleagues during a workshop organised by Findacure – these workshops are very educating and a good chance to exchange experiences.
A local giving https://localgiving.org/charity/ataxia-and-me/ and webinar, to familiar our selves with online fundraising, ahead of #TeamAtaxia (Wales) #TîmAtaxia (Cymru) entering in the Winter Wonder wheels fundraising event.
A more sedate occasion was to attend Mediwales Uk Health Tech conference. And then the Mediwales Awards which was a very good evening of networking and catching up with colleagues in the Health arena. It was good opportunity to bring along a friend from Oxfordpharmagenesis Health science communicators. A fantastic event to end the year.
Patients as Partners was an opportunity to share a display with PulseInfoFrame. Again good networking, knowledge of Rare disease patient interactions plus catching up with colleagues, and fitting in some transatlantic video calls (time zones are NO Barrier to Rare disease patient advocacy !.
Planning and taking part in webinar with ISMPP-U patients experience within medical publications.
A few Quiet weeks of webinars, local meetings and social media interaction took us to Rare disease Day with the Welsh Rare disease reception in the SENEDD (Welsh Assembly / Parliament ), Findacure drug repurposing conference, and on Rare disease day itself, Ataxia and Me were welcomed to the Cardiff office of Oxfordpharmagenesis for a day of social media Broadcasting “#ShowYourRare”.
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.