Her Royal Highness Princess Chulabhorn Krom Phra Srisavangavadhana will preside over the opening ceremony at 6pm on Saturday, September 3, in the hotel’s Astor Ballroom.
From the situation of Spinal Muscular Atrophy (SMA) is classified as a rare genetic disorder which is not well known in Thai society. Thailand has found about 200 cases of SMA, although the number may not be large, but the disease has a major impact on their daily life. The 70 percent of patients need treatment information and access to treatment systems promptly. The Embassy of Switzerland in Thailand and The Foundation to Eradicate Neuromuscular Disease give importance to these patients and supporting the Rare & Share Project which initiated by Roche Thailand to public unfamiliarity of this rare diseases especially Spinal Muscular Atrophy (SMA) and Neuromyelitis Optica Spectrum Disorder (NMOSD)
The Rare & Share Project is the opportunity to public the information of this rare diseases and raise funds for patients with Spinal Muscular Atrophy (SMA)
Diners will be treated to exclusive meals prepared by Chef David Hartwig at IGNIV Bangkok’s restaurant, which was awarded one star in the Michelin Guide Thailand 2022.
The five-course meal features Fried Chicken Taco & Red Beet Injection, Lettuce; Green Apple and Red Cabbage Hamachi; Smoked Eggs; Wagyu Striploin; and dessert.
The meal will be prepared and presented to enhance awareness of SMA patient care, from a menu choice that focuses on facilitating young children, who are the main victims of the disease, to the use of loaded utensils to represent SMA patients’ struggles with daily activities and the dedication of parents who spend 24 hours caring for their sick child.
This exclusive dining experience will take place over three days only: Friday, October 28; Saturday, November 12; and Saturday, December 17. All proceeds will be donated to Siriraj Foundation’s Spinal Muscular Atrophy Fund.
Next year, Carla restaurant and J’AIME restaurant are going to partner on the Rare & Share menu and dining experience to raise more funds for SMA patients.
Prof. Dr. Prasit Watanapa, Dean of the Faculty of Medicine Siriraj Hospital and the Chairman of FEND, said that SMA is found mostly in children, with about 200 cases reported in Thailand. Patients require constant care from medical professionals, as well as continued support from related authorities. “I hope that this event will help increase public awareness of SMA and prompt policymakers in public health to provide necessary support to help these patients have a better quality of life,” he said.
Conradin Rasi, Chargé d'affaires at the Embassy of Switzerland, said: “Statistics show that 95 per cent of rare diseases are uncurable. The Embassy is committed to supporting the Rare & Share project to raise awareness about rare diseases and to raise funds for patients, especially young patients.”
Farid Bidgoli, General Manager for Roche Thailand, Myanmar, Cambodia and Laos, said: “Roche prioritises patients with rare diseases as they struggle to maintain normal daily lives and may face difficulties and complications throughout their lives. Spinal Muscular Atrophy or SMA poses great challenges to patients as well as their family members and caretakers. Hence, Roche has been investing in research and development to find effective treatments for SMA. We have also been working with many partners and experts in rare diseases to find ways to improve patients’ quality of life Thus the Rare & Share project was initiated to help patients with SMA.
To make a reservation at The St Regis Bangkok Hotel, e-mail
Donations can be made directly to the project via Foundation to Eradicate Neuromuscular Disease’s bank account number 033-406813-6 (Siam Commercial Bank, non-tax deductible), or donate through Siriraj Foundation’s bank account number 016-3-00049-4 (Siam Commercial Bank, tax deductible) for Eradicate Neuromuscular Disease Fund, Fund No: B002607
Reference
M-TH-00002453
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