Saturday, April 7, 2012


Susan on the left and Emilene behind me

When, on our walk for MSA last year, my friend Laurette captured this photo with Susan and Emilene walking behind me, none of us had any idea of the significance of this. This was just the beginning of a long road of many kilometers that lay ahead; THE CAMINO DE SANTIAGO DE COMPOSTELA.  A long name for a very long journey.

It is with great joy that I can now announce that they and their hiking partners will be walking this pilgrimage for MSA in Spain in June this year. Last week I was privileged to meet with these ladies here at my home and their enthusiasm was infectious.  Read about this meeting on Emilene’s beautifully written blog, where there is also more information on this pilgrimage.

front; Emilene, me and Milo. Back; Karin Susan, Gerda and Lilian

Although I met Emilene for the first time on 3 October last year, she shares so many interests and passions with me that it feels like I’ve known her all my life.  She will start her pilgrimage with one partner, Eddie (some others might join her at a later stage), on the 6th of June in St Jean Pied de Port, at the foot of the Pyrenees in France.  They  will walk a whopping 780 kilometres to Santiago de Compostela in Spain and she aims to, God willing, end her pilgrimage in the cathedral there on the 12th of July, her 50th birthday. 

My dear friend Susan and I have, with our husbands, shared countless 4x4 safaris, weekend getaways, and holidays over the last decades.  Her sunny and easy-going personality makes her a joy as a travel companion and any trip with her will inevitably lead to lots of laughter.  She will be accompanied by her sister Gerda and  friend Esther. They plan to walk approximately 500 kilometres from Burgos in Spain from the 17th of June and aim to end on the 12th of July in Santiago.  The two groups are looking forward to meeting up over the last part of their journey.

We discussed what promotion materials they would be able to take with them.  The general rule is that a woman can carry 10% of her body weight, which leaves the average woman with 6 kilograms, including the weight of her backpack.  A huge restriction, especially if you are packing for a couple of weeks of hard hiking.  We decided on a laminated tag with the red poppy logo of the WALK A MILE, BURN A CANDLE campaign attached to their backpacks, a MSA bracelet, and a few very small flyers/business cards.  Rita Ydennek, the initiator of this project, also suggested that they take a memory stick with them in case they need to print more on the way.

Some questions were asked at our meeting: 

- What is the purpose of creating awareness for MSA?  
- Is there any research being done to find a cure for MSA, by whom, and where should funds be donated for this? 

Purpose of Awareness? The answer that came to my mind was as follows:  When, after a year on my own, I started looking for other patients with MSA for mutual support, I found many patients who were at a much more advanced stage than me.  This very grim picture made me realise that we need to pool our strengths world wide to draw attention to this disease, in the hope that it will lead to the funding of research, and eventually, a cure.

My involvement in these awareness campaigns has had a positive impact on my life and given me a purpose, a goal to pursue.  Instead of feeling helpless and hopeless I am now contributing to something that could lead to a positive outcome for me and all the other patients. 

After visiting another patient and her family in my home town recently and hearing their story, I realised that awareness could lead to better knowledge, also in the medical profession, and that in turn could lead to better understanding, service to and treatment of patients.

My friend Karin and I are also hoping to attract the attention of other patients in South Africa to our facebook page so that we can strengthen our local numbers and communicate with, and support each other.

Research? With the help of a friend, I found the following informative links regarding individuals involved with ongoing and outstanding research:

Prof. David Robertson heads the clinical research department at Vanderbilt University, Nashville, Tenessee.  He is recognised world wide as an expert on MSA and has been involved with the disease for 43 years.

- Prof. Charles Ide of Western Michigan university and his team of researchers are also working on finding solutions for MSA.

What else?  It would be wonderful if somehow the press and radio could become involved before these hikers depart on this brave venture to create awareness for MSA.

“I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do.” Edward Everett Hale


  1. Good job & good luck! We translated in our italian FB MSA page & in our Facebook group for PSP and MSA (more than 850 likes) your initiative.

  2. Thank you to our new friends in Italy for sharing this on their page and helping to create publicity for this event!


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