During the week of 8th-15th September we launched ‘Come to my House’ an initiative to:
- Raise awareness of Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis, and
- Raise funds for a double-blinded placebo controlled study at The Alfred Hospital investigating the safety and efficacy of treating CCSVI by balloon angioplasty.
The simple concept is, as many people living with Multiple Sclerosis (or any chronic illness) can find it hard to get out or access social venues, you can invite your friends and family to your house. What you do can be as creative and as simple as you wish it to be.
This past week we have had a number of events. Jill kicked things off with a morning tea in her country town. Over 60 of her family, friends and neighbours came to listen to Jill share her experience of living with MS, being treated for CCSVI and her continuing improvements 10 months later. Jill baked for days, sold plates of morning tea and we hear there was such an abundance that people bought doggy bags full of goodies to take home!
Last Friday Leonie (and precious daughter) put on a delicious afternoon tea at her workplace. Later Leonie said, “the amount raised at work, I can’t believe how generous the donations were. A teacher who I haven’t had a lot to do with came to my desk after morning tea and put a folded $50 note in my hand. I went to offer her some change and she ran out of the office. I almost cried – people really do care!”
On Sunday morning the doors opened for business at Emily’s Charity Market in Collingwood. She had a terrific display of brick-a-brac, clothes, books and Emily and her friends put on a barbeque for passers-by (nothing like the smell of sizzling sausages to raise a crowd). It was a great community event and a lovely way for Emily to honour her mother who lives with MS.
That afternoon we had two high teas under way. To say Carol’s spread was breathtaking would be an understatement! It is no surprise that Carol’s guests left with empty pockets and bellies full of cake! This was an incredible effort and testimony to the effect that being treated for CCSVI has had on Carol’s life.
Leonie and Tony opened their home to some wonderful and supportive friends. We are told another amazing display of culinary delights were on offer. Leonie was blown away at the generosity and support, as Leonie is such a generous person herself it is not surprising that those around her wanted to give back.
“On Grandfinal weekend Robyn held a Enjo party with a few friends. Thanks to all who participated in the amazing Enjo raffle with proceeds going to CCSVI research.”
We had such a fun and successful couple of weeks that we will certainly do this again, in fact, if you have an idea for an event we would be thrilled to hear from you. You can register at firstname.lastname@example.org. It doesn’t matter what state or country you live in – all are invited to participate.
Some other gatherings we have registered for the next few weeks are; a Murder Mystery Night and another is using their big 40th Birthday Party as an opportunity to ask friends to contribute to CCSVI research. We look forward to hearing the stories from each of these.
We are humbled and grateful to those who hosted and generously contributed and at 30 September 2013, $5,209 has been raised for the Alfred’s CCSVI in Multiple Sclerosis study.
The CCSVI Australia team