Tourette’s and Coping with COVID-19

Tourette’s and Coping with COVID-19

Tourette’s Mothers Exchange Experience of Coping with COVID-19 The awareness month for Tourette’s Syndrome runs from May 15th – June 15th. Like many other patient groups, the Tourette’s Association of America, has created a range of webinars to support their community during the pandemic.  “My tics…

ADHD Communities Rise To The COVID Challenge

ADHD Communities Rise To The COVID Challenge

Having worked for a couple of decades in support for people with child, adolescent and adult ADHD, it’s pretty clearly that it’s not an ideal condition to have when locked down. Fortunately, those who understand the condition best, the patient groups have stepped in with…

ADHD Ireland Surveys Pandemic Impact on Families

ADHD Ireland Surveys Pandemic Impact on Families

Patient groups are adept at using surveys to raise awareness of their cause. Recently we looked at how ADHD patient groups were helping their communities during the pandemic, including ADHD Ireland. Now this group has gained publicity for the community, by surveying the impact of…

COVID-19 – CHARITIES HELP EXPLAIN  TO CHILDREN

COVID-19 – CHARITIES HELP EXPLAIN TO CHILDREN

EXPLAINING TO CHILDREN As adults, COVID-19 is frightening, but for children experiencing lockdown and parental and familial stress, it can be particularly worrying trying to make sense of this new ‘normal’. Having faced the challenge of writing for children with physical and mental health conditions,…

Brain Tumour Foundation of Canada – COVID19

Brain Tumour Foundation of Canada – COVID19

COVID-19 SWEAR BOX VIRTUAL FUNDRAISING Even before the lockdown in our house we’d tried to introduce a swear box to curb obsessive conversations about COVID-19. So, it was great to see a Canadian brain tumour patient group introducing a virtual ‘swear jar’ as part of…

UK CHARITY POOLS BEST PRACTICE ON FUNDRAISING

UK CHARITY POOLS BEST PRACTICE ON FUNDRAISING

As a charity-shop addict, it’s clear how important traditional, physical fundraising is for regular, sustainable revenue streams. With the growth of social media, we’ve seen the enormous power of big events and campaigns to bring people together to fundraise for health charities. Now, with billions…

Connecting Our Brain Bank

Connecting Our Brain Bank

One of the learnings from the current pandemic is how rapidly and easily people with all ranges of technical ability and experience have embraced online video meetings. Once expensive and limited to big corporates, during the crisis it’s connected new users to bring families together,…

Alzheimer’s Association – Virtual Library to Pinterest App Pages

Alzheimer’s Association – Virtual Library to Pinterest App Pages

From a virtual library to Pinterest app pages: Alz.org Patient groups can be very versatile at bringing together comprehensive resources in one place for patient and carers. The US-based, not-for-profit, Alzheimer’s Association unites real world and virtual resources to help empower patient, carer and clinical…

ECPC – Balancing the needs of Individuals

ECPC – Balancing the needs of Individuals

Balancing needs of the individual with broad advocacy For larger, international umbrella patient groups, maintaining ties with, and supporting individual patients, can be challenging. Nonetheless, one such organisation has made a point of recognising the importance of placing the patient at the heart of what…

British Tinnitus Association – Mapping the Apps for Tinnitus

British Tinnitus Association – Mapping the Apps for Tinnitus

Tinnitus Patient Groups Estimates vary wildly on the prevalence of tinnitus, from 8% for the general population up to 30% for those over 60. As I write this, I’m aware of a persistent whistling in my ears, but I’m one of the lucky ones. Diagnosed…