The following three individuals, together with their care providers, will be attending the International Symposium on ALS/MND Research in Glasgow, Scotland, UK this December as Patient Fellows. They will be reporting on their thoughts and impressions throughout and afterwards. Here are short bios provided by the Fellows
Sunny Brous Erasmus
I’m a wife, daughter, ‘dog mama,’ sister, aunt, and friend who was diagnosed with ALS in January 2015, right before my 28th birthday. Close to four years later, I’m still making the most of each day with my husband, Kenneth, and our chocolate Lab, Baloo Bear.
I had to leave my job as director of development and events for a nonprofit late last year, but Kenneth and I are using my ‘retirement’ as an opportunity to check things off our bucket lists. Three words I’d use to describe myself are ‘sleepy,” ‘bossy,’ and ‘connected.’
And, three things I want you to know about ALS? One – It can affect anyone at any time. Two – It’s ruthless and unforgiving in every way imaginable. And three – The families living with this disease need all of the love, prayers, and support available.
My personal mantra is ‘no apologies, no excuses, no regrets.’ Any day is a good day that involves my smokin’ hot husband, friends and family, and laughing. One of my favorite quotes is from Lewis Carroll: ‘One of the secrets of life is that all that is really worth the doing is what we do for others.’ I want my legacy to be that, even though I had every reason to quit, I always invested in loving others, helping in any and every way possible, and never, ever stopped smiling.
Social Media I use:
I am Keith Smith and I was initially diagnosed with MND by my physiotherapist in May 2013, the diagnosis was confirmed as the ALS variant by my consultant in February 2014.
Sun Tzu said “Know Yourself, Know Your Enemy”. So after I got over the devastating news, I spent every moment finding out everything I could about my enemy, MND.
Over the last four years, I have spoken with and interviewed researchers involved in understanding the disease and finding possible treatments. I have also interview Dr Christopher McDermott, who is developing the Sheffield Support Snood, and Dr Esther Hobson, who is developing (TiM) Telehealth in MND. These projects look to address the needs of the current generation of MND/ALS patients.
At the 29th International ALS MND Symposium, I will try to interview as many of the Plenary Speakers as possible over the 3 days of the conference. I will also try to cover some of the thousand Poster Campaigns, with YouTube and Facebook live casts.
I intend to bring more of the dry research projects out of the university labs, by interviewing more of the top MND/ALS researchers, to give them a fresh audience on my social media feeds.
Social Media I use:
- Twitter @BigRedKeith
- Facebook Pages I use Keith Smith MND, Keeping Up With Keith, Our MND Army
- YouTube Channel
I am a maritime lawyer and partner in Gateley PLC. Until April 2016 I headed our Shipping Unit in London. An Australian, I am qualified there (1981); England/Wales (1995); & Scotland (1999). My career has been mainly maritime law – within Australia and the UK. My sub-specialities are offshore support vessels; superyachts; and asbestos disease cases. I was in London from 2009 and before that practised from Edinburgh, or Brisbane, Australia. I went on sick leave from May 2016 and live in Edinburgh.
First symptoms appeared in 2013 (with trips/falls and speech slurring). After approaching my doctor in August 2013 I saw a Consultant neurologist. His initial view by late 2013 was MND. This was followed by a 2nd opinion and indicative diagnosis of Primary Lateral Sclerosis (PLS) in December 2014. Progression remains slow. The impact is on mobility/balance and speech. Although I walked without any aids for a period, I now use a stick. I have a wheelchair for use if I must walk any distance. My speech is comprehensible in slow and short bursts and without aids.
Since May 2016, I have travelled with my wife to visit a number of “bucket list” destinations. My wife is a doctor (GP) and we have three young adult children.
Social Media I use: