The Stopwatch Gardener

A gardening blog from Sheila M. Averbuch

Rare plants for rare disease research – supporting NA

April4

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A few years ago, friends of mine mentioned that their daughter had begun having some difficulty chewing and swallowing. I think she was just 22 at the time, and I remember she spent ages going from doctor to doctor looking for a diagnosis, as her balance and speech got worse.

Click for larger imageIt did not end happily. In fact the result was just about as bad as bad can get; Alex was diagnosed as one of only a tiny handful of patients in the UK who have something called neuroacanthocytosis. It’s a relentless neuro-degenerative disease that slowly robs the sufferer of their ability to chew, speak and walk. Probably the worst aspect is that it’s often adult onset: it can hit people in their mid-20s just at the time they should be starting their own independent lives, returning them to total dependence on their families. Even today, there are just 10 diagnosed cases in the UK of this disease, which bears resemblance to, and we believe could shed light on, other neuro-degenerative diseases like Parkinson’s, Huntington’s and Alzheimer’s.

Rare disease research: families are doing it for themselves

My friends started an Advocacy for NA Patients and a few years ago I started helping them by publishing NA News, the 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 the tireless efforts of the Advocacy and their research partners, scientists have identified the protein missing in patients who have one of the NA group of diseases (chorea acanthocytosis). Research is making good progress: if only they could depend upon long term funding from some reliable source.
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So I’m having a plant sale (jump to a list of the donated plants here: http://bit.ly/swgsale. One of my big messages is, rare disease research should not be supported by plant sales. It should be supported by long-term and I believe government-backed research, especially in economies like Scotland’s, where we have a tradition of excellence in genetics and have a fighting chance of finding the causes of these rare diseases.

My friends at the NA Advocacy have attracted some significant European funding and some pharmaceutical company attention, but for now, bake sales and plant sales continue to play a vital role. So on 6 May 2012, 10am to 1pm, I’m holding “Rare plants for rare disease research” here in Pencaitland, East Lothian. If you’re anywhere in the Edinburgh vicinity, please stop by for plants, cakes, and a pitying glance at my wisteria, whose frozen buds are now dropping by the handful onto the ground following our cursed late deep-freeze.

Stopwatch Gardener on Facebook? Yup.

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I’ll put updates about the sale and about my garden in general on the new Facebook page for Stopwatch Gardener that I’ve started — it’s a lonesome, newborn thing which would be most grateful for any likes. I’ve uploaded pictures of the plants that I know I have for sale. Notice the total lack of rare plants? But I’m hopeful. You can also follow the hashtag #swgsale on twitter.

I heard today that the wonderful and generous Beth Chatto team is going to donate plants, as is Frank from the gorgeous Humbie Dean garden near me. I’ve also been onto Brighton Plants, as well as MacPlants, Crug Farm & Kevock Garden Plants. By the sheer force of my obnoxious pushiness I hope to get more donations of unusual plants.

Could you donate a rare or unusual plant?

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Nurseries of the UK, please get in touch if there’s anything rare or unusual you could donate before 5 May. It will help us gain media attention for this event, which will mean everything to an organisation like the NA Advocacy. If you’d like to make a donation towards NA research but you can’t come to the sale, please visit our fundraising page: Rare Plants for Rare Disease Research. The Advocacy for Neuroacanthocytosis Patients is a registered UK Charity and every single donation, no matter how small, is much appreciated.

(Thanks to the clever people, too, at Fennel & Fern and to Elizabeth Buckley for tactical advice on how to sell cake!)

To the right throughout this post are some of what we’ll have on sale on 6 May. Do come.

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7 Comments to

“Rare plants for rare disease research – supporting NA”

  1. On April 5th, 2012 at 6:45 am Amelia Says:

    I wish you success and good weather for the 5 May.

  2. On April 5th, 2012 at 4:27 pm The StopWatch Gardener Says:

    Thank you so much Amelia for leaving your positive thoughts.

  3. On April 6th, 2012 at 8:06 am Lesley Baker Says:

    I’ll donate something for this, & will ask my colleague too. V busy with family visiting, but will let you know what, & send pics, later.
    Good luck with it! Lesley

  4. On April 6th, 2012 at 10:03 am The StopWatch Gardener Says:

    Dear Lesley, you’re a star, thank you, I saw from your website that you are also supporting motor neuron disease. Really appreciate your assistance; don’t hesitate to give me a ring if you have any questions. If you’re delivering something, after 20th April is best. Thank you thank you thank you!

  5. On April 6th, 2012 at 3:21 pm The StopWatch Gardener Says:

    What could be better? I’ve just heard from Marc Diacono that he’d like to help us, and Sue Wyn-Jones from Crug Farm Nursery will also make a donation to support the event on 6 May. Please folks consider supporting these fabulous shops, especially if you’re interested in unusual edibles (http://shop.otterfarm.co.uk/) and the finds of the UK’s best-known plant hunters (http://crug-farm.co.uk/).

    Not forgetting Lesley from Birchwood, who was first to get in touch – http://www.birchwoodplants.co.uk/ for gorgeous dianthus, hardy geraniums and other herbaceous.

  6. On April 17th, 2012 at 4:11 pm The StopWatch Gardener Says:

    Huge thanks to the other nurseries who have agreed to support Rare Plants for Rare Disease Research: Sarah Raven and Kevok Garden Plants, along with the gorgeous Winton House, a historic home and events venue here in our village. Please consider going to Sarah Raven and Kevok when you’re next doing your shopping. Sarah is having a bulb sale just now (http://www.sarahraven.com/shop/promotions.html) and Kevok, who is exhibiting at Malvern this year, has a gorgeous range of unusual alpine and woodland plants: http://www.kevockgarden.co.uk/store/

  7. On May 3rd, 2012 at 2:19 pm The StopWatch Gardener Says:

    We have such generous donors! To see a full list of donated plants from Binny Plants, Birchwood Plants, Otter Farm, David Austin Roses, Sarah Raven, Beth Chatto Gardens, Humbie Dean, Winton House and more, please got o http://bit.ly/swgsale

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