Joomla gallery extension by joomlashine.com
Main Promo Images
Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
Friedreich's Ataxia fundraising activities and staying in touch
Participate and stay informed about our fundraising events. Take part in our Facebook community with FA patients, relatives, researchers and friends from all around the world!
08 May 2008
By Deborah Wain
A Disabled dad determined to work has set up his own shopping agency helping to make sure vulnerable people get the groceries they need.
Shane Bratby takes phone and post orders from customers who cannot use the internet and then uses supermarket on-line delivery services to arrange a drop-off of items.
He expects his enterprise Shopping 4 U to draw business from all parts of the UK and has already got a client in Scotland.
Explained Shane: "Because I'm disabled myself, I know how difficult it can be for elderly and disabled people to do their shopping. Online delivery services offered by the big supermarkets are brilliant but many people can't use them because they have no access to the Internet.
For a small fee people can let me do the work. It saves them time and the cost of taxis and it's also better for the environment.
"I'm on disability benefits but I really want to work and show people that I can do something good as well as provide a better life for my family, including my disabled daughter."
Shane, 24, suffers from Friedreich's ataxia, an inherited neurological disorder that causes problems with coordination and gets worse over time. He has been confined to a wheelchair for over a year.
He lives in Conisbrough with partner Amanda Lee, 32, and their two children Chloe, six, and three-year-old Chanelle, who has cerebral palsy.
Shane, who wanted a career in sales when he was growing up, is a keen computer user and trades using the shopping site Ebay.
He started a computer course at Doncaster College but could not continue because of illness and most of his skills have been self-taught. He has also completed a business start-up course through Doncaster Chamber of Commerce and Enterprise and thoroughly researched his idea before taking the plunge.
Promoting his business is a challenge but he has approached health centres to ask if they will display his flyers and plans a leaflet drop around local pensioners' estates.
Shane says: "My research has shown that people like to browse before they buy so I've done a catalogue which I send out with a welcome pack.
After someone places an order, I ring them with details of how much the shop will cost and when the delivery will be and, if that's all okay, I take payment and confirm the online order."
To contact Shane, ring (01709) 866370 or email shanebratby@.... The shopping service's website is www.shopping4u.uk.com
Last Updated: 08 May 2008 12:47 PM
If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.
The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.
Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!
Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:
1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.