A Cluny man is appealing to locals to sign up for a fancy dress fundraiser to help pay for life-changing treatment for his beloved partner who is suffering from debilitating MS.
Clinton Gaw is organising an extreme fancy dress kitesurfing event next month to raise as much money as possible to send his partner Lynne Robertson for Autologous Hematopoietic Stem Cell Transplantation (AHSCT) treatment in Moscow in September.
Clinton, who himself is going blind with a genetic degenerative eye condition, said Lynne has been suffering with extremely rare Progressive Relapsing Multiple Sclerosis for 25 years.
Her prognosis is a continued slow and steady neurologic decline with a continued build-up of disability and her relapses have grown even more agressive since official diagnosis in 2012.
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He said the AHSCT treatment is currently not available on the NHS in Scotland and in England is only offered to those in the early stages of the relapsing remitting form of the disease.
He said: “AHSCT, however, is available in certain clinics throughout the world for all forms of MS. It involves harvesting the person’s own stem cells from peripheral blood, storing them in sub-zero temperatures and re-infusing them at a later stage after a high dose chemotherapy or immunosuppressive therapy. This builds a completely new immune system free from MS.”
Clinton said she has been given an admission date for the treatment programme so needs to raise £60,000 which will pay for the cost of the treatment as well as a visa application, flights, accommodation and aftercare.
He has organised a series of fundraisers including extreme kitesurfing (kitesurfing is a wind-powered surface watersport using a kite and a board to move across the water) on July 20. The race starts on Cramond Beach at 10am where all race participants must meet at 9am and it finishes at Pettycur Bay Beach in Kinghorn.
Clinton continued: “All riders will be given a reference number and must raise sponsorship to take part as the event is in aid of ‘Lynne’s MS Reboot’. There is no specific amount needed to be raised individually but obviously the more we can all raise the better.”
Clinton said kitesurfers taking part must be able to go upwind (a term understood by all kitesurfers) and be able to do emergency ‘packdown’ in the water. But a number of safety boats with trained crew will be there on the day. To read Lynne’s story visit: www.gofundme.com/hsct-reboot-for-lynne039s-ms and to sign up for the fundraiser visit: www.extremefancydresskitesurfing.co.uk/