For immediate release 5 April 2012
The Stopwatch Gardener (www.stopwatchgardener.com), based just outside Edinburgh, is holding a special ‘Rare Plants for Rare Disease Research’ event May 6th between 10am and 1pm.
Organised by Sheila Averbuch, the writer behind the gardening blog, the fundraiser is in aid of the Advocacy for Neuroacanthocytosis Patients. The Advocacy is a registered charity which sponsors research into this extremely rare neurological disorder, which may one day shed light on other neuro-degenerative diseases like Parkinson’s, Huntington’s and Alzheimer’s.
As Sheila explains,
“A few years ago I started helping the Advocacy by publishing a dedicated email newsletter for their growing community of research scientists, patients and clinicians now studying the disease. There hasn’t been any Lorenzo’s oil style miracle yet, but thanks to their tireless efforts, scientists have identified the protein missing in patients who have one of the NA group of diseases. Research is making good progress: if only they could depend upon long term funding from some reliable source. Until that day comes it’s fundraisers like this plant sale which can make all the difference to raising awareness and funds.
“One of my big messages is, rare disease research should not be supported by plant sales, but by sustained and long-term funding.”
Call for rare plant donations
In the run-up to the day Sheila is looking for the support of professional and amateur gardeners who would be willing to donate plants, ideally rare or unusual, to sell at the event. Pictures of donated plants and the names of supporting nurseries will be posted on http://www.facebook.com/stopwatchgardener
Beth Chatto Gardens support
Beth Chatto Gardens in Essex, the county which has 3 of the nation’s 10 diagnosed cases of NA, is among those nurseries who have agreed to send plants for sale. Other donors include Otter Farm, Crug Farm Nursery and Birchwood Plants of Mottisfont in Hampshire. A full and updated list is at http://bit.ly/RarePlant
If you think you can help with rare plant donations, please email or call Sheila firstname.lastname@example.org or tel. 01875 340 641.
For further information please visit http://bit.ly/RarePlant. Supporters who would like to contribute to the cause but cannot attend the charity event are encouraged to make a donation at https://mydonate.bt.com/fundraisers/rareplant
NOTES TO EDITORS:
- What: Charity plant sale with teas and home baking
- Where: 6 May, 10am – 1pm, Mercat Cottage, Pencaitland, East Lothian, outside Edinburgh
- Organised by: Sheila Averbuch, the writer behind the gardening blog Stopwatch Gardener. For more information follow the hash tag #swgsale on Twitter, on Facebook visit http://www.facebook.com/stopwatchgardener or tel. 01875 340 641
- Why: The plant sale fundraiser is in aid of the Advocacy for Neuroacanthocytosis Patients, a registered charity which sponsors research into this extremely rare neurological disorder. One of the UK’s only diagnosed patients is a family friend of the Averbuchs. Neuroacanthocytosis (NA) is one of Britain’s rarest rare diseases – only 10 diagnosed patients in the UK and 1,000 globally.
Further facts about NA and rare diseases
- NA is actually a group of four rare neurological diseases which bear similarities to and may shed light on common neuro-degenerative diseases such as Alzheimer’s, Huntington’s and Parkinson’s. The NA diseases are characterised by movement disorders and strike young adults in their 20’s, leaving them dependent on others just when their independent lives should begin.
- The research financed by the Advocacy focuses on the unusual spiky red blood cells that may lead to an understanding of why brain cells self-destruct. Researchers in the UK and throughout Europe and North America are supported. The Advocacy for Neuroacanthocytosis Patients website (www.naadvocacy.org) includes a fuller description of NA disease group symptoms, a summary of the most recent research news and updates on NA patients in the UK and abroad.
- Collectively rare diseases are not rare. – 3.5 million people in the UK will be affected by a rare disease at some point in their life. (stats from Rare Disease UK, RDUK, the national alliance for people with rare diseases and all who support them.)
Sheila M. Averbuch
The Stopwatch Gardener – Making a little time grow a long way