Three Quarters Done... What awareness means to me... CHD Awareness Week

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2 days, 35km walked or run...
Yesterday was the CHF Trustees meeting (of which more later) so it was a pre-dawn start and a 10km walk from St Paul's to the Vauxhall Bridge along the south bank of the Thames, walking under the London Eye and with stunning views of the Houses of Parliament. The way back on the north bank was along Whitehall and Paul's Walk... I jest not...
Today was a 10mile run, my only pre-run challenge to myself was to jog all the 10miles, blow the time just jog it... And so I did! for those interested in such things the 1st 5miles were in 65 min, the return 5 in 62min... Which equals me being very, very happy... and very very hungry!

The GPS feed is here http://connect.garmin.com/activity/24152903 Add in the 5km warm up/cool down (the bit between mine and the start) and 35km is done for the weekend:-)

Its CHD Awareness Week, well one of them - the other one is in May... So what does it mean to me - 2 things -

First, I want all parents and patients of CHD to know and feel entitled to, and if necessary demand the best healthcare. For parents that can mean prior to diagnosis, and often diagnosis is before the child is born, there should be decent echo scans with referral to specialists if any issues are suspected. After birth and diagnosis, there needs to be appropriate advice given, support found (financial, emotional ect), surgical and medical teams equipped to provide worldclass healthcare. This care needs to be lifelong, including specialist adult/GUCH services.

Second, I want people, the public, our employers, friends, occasionally lovers to appreciate some of what its like to live with congenital heart disease. If they're not involved through family or friends they'll never "know" some of the stuff we live with every day but an understanding that the "miracle blue babies" of 40-odd years ago are now grown up, some with no major issues, others needing as much support and help as they did as a baby.

So where does the CHF Trustee's meeting fit in... As well as the Build-a-Bear initiative (http://tiny.cc/RyrI8) there's a series of events being planned and delivered throughout the year - the annual trip to the Children's Ballet, the Molly's Dollies picnic (Molly's dollies have scars on so children can have operations explained to them, and their dolly looks like they do) and others that are still being planned.

And that's where the Trustee's come in, we've a damn good Chief Exec so we don't need to get involved in day-2-day stuff but we are responsible for the direction and finances of the Children's Heart Federation so any event has to fit in with our strategic view and be affordable.

The rest of awareness week is another Trustees meeting - of the HeartCarePartnership, which I'll explain later in the week and the big event - the GUCH PA Awareness Walk in Cambridge - http://tiny.cc/zewLc

So to leave you an awareness video with a difference - the GUCH Walking Club walked 100km last summer - http://www.youtube.com/watch?v=8ku3D95iUaY This was my review, the other days are up on YouTube too... Enjoy!

TTFN

Paul

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