The Foundation to Eradicate Neuromuscular Disease (FEND), in partnership with CLARA and J’AIME restaurants, today launched the sequel to its Rare & Share project – an initiative from Roche Thailand to support and improve the quality of life for rare disease patients in Thailand.
For this occasion, FEND has joined leading chefs in Thailand to create an exclusive course-dining experience, in which the proceeds will be donated to help patients with Spinal muscular atrophy (SMA). This is an on-going initiative from the previous charity dinner in 2022, which was graced by Her Royal Highness Princess Chulabhorn Krom Phra Srisavangavadhana.
This time, the Rare & Share project has collaborated with two leading chefs, Chef Christian Martina of CLARA, recently awarded 23rd. Best Italian Restaurant in the World by 50 TOP ITALY 2022, and Chef Amerigo Sesti of J’AIME, who received a one Michelin star to create a special course-dining experience. Each course will represent to diners the real-life experiences of patients with SMA, to help raise awareness for Thai people about the rare disease. Specially curated items, such as tableware and giant heavy-weight cutlery is carefully designed for this occasion, and used to reflect the handling of objects in patients with muscular dystrophy. There is also the addition of menu items that require more than 24-hours of cook time, which reflects the 24-hours care that is required for SMA patients.
Spinal Muscular Atrophy (SMA) is a rare disease caused by an inherited abnormality in the recessive gene. The incidence rate is 1:10,000 newborn worldwide each year. This causes motor neurons to continuously lose signal transmission from the spinal cord to the muscles. Patients can display symptoms ranging from birth to adulthood. This includes weak limbs, results in difficulty moving, and even breathing. Some patients have problems with the pulmonary system to the point of respiratory failure. As a result, SMA patients need to use assistive devices such as wheelchairs, ventilators and tracheostomy tubes to help them function on a day-to-day basis.
The 6-courses dinner is a rendition of real-life challenges experiennced by SMA patients and caretakers:
1. Amuse Bouche | Buckwheat, mushroom, taleggio, black truffle, potato, Avocado Oil Mayo, Paprika, Carasau, Stracciatella, Tomato and Oregano
A nutritional course that resembles junk food/desert that is well-loved by children. A major concern for children with SMA is weight gain. Therefore, having a nutritional and healthy diet is important. Being overweight increases stress on the muscles, bones, and joints, making physical activities and breathing more difficult.
2. Capensante | Sea Scallop, sea urchin, Oscietra caviar and Salicornia
A course served with specially curated glasses and dry ice, that resembles poor vision experienced by Neuromyelitis Optica Spectrum Disorder (NMOSD) patients.3. Raviolo | Homemade pasta, hen, foie gras and juniper
A course that can be consumed through a straw. This represents the type of food often consumed by SMA patients that are not hard to chew, such as gels, foams, sauces.4. Halibut | Halibut, cuttlefish, morel, champagne and tarragon
A course served with heavy weighted cutlery. This displays how children with SMA often become fatigued with eating, whereby muscle weakness and dexterity make it difficult for them to perform normal daily tasks.5. Bollito Misto | 72-hours boiled meat, apple mustard, salsa verde and bell pepper (Beef replacement available upon request)
A course that takes at least 24 hours to cook, with mood and tone plated as night and day. This demonstrates the 24-hour support required by caregivers for children with Type 1 & 2 SMA, whereby around the clock care is needed to turn them during the day and night to avoid bed sores and to support improved breathing.6. Crepes | Crepe souffle, Prachuap chocolate, coconut and rum
The dessert course, served as a shared dessert, features slowly melting vanilla ice cream to symbolize a relapse in patients. If not treated promptly, they might not be able to return to normal life. The sharing dessert is also a representation of the RARE & SHARE project, that puts importance on raising awareness of rare diseases and to share more information about SMA and NMOSD patients.All food proceeds after deducting expenses will be donated to the Foundation to Eradicate Neuromuscular Disease (FEND) to help improve the quality of life for patients with rare diseases in Thailand.
Prof. Dr. Prasit Watanapa, Dean of the Faculty of Medicine Siriraj Hospital and the Chairman of FEND, said “Caring for pediatric patients with SMA relies on the cooperation of all sectors, from specialist doctors, doctors, caretakers, as well as support from the public and private sectors. We hope that the continuation of the Rare & Share project through this charity dinner experience will help increase awareness about rare diseases in Thailand and be a driving force for a more comprehensive and better healthcare policy and system in the country.”
The charity meals are available throughout February – May 2023, on the following dates.
● Tuesday, February 28, 2023 (18.00 – 20.00 hrs.) at J’AIME Restaurant.
● Sunday, March 26, 2023 (18.00 – 20.00 hrs.) at CLARA restaurant
● Tuesday, April 25, 2023 (18.00 – 20.00) at J’AIME restaurant.
● Sunday 28 May 2023 (18.00 – 20.00 hrs.) at CLARA restaurant
For reservation and more information, please contact J’AIME Restaurant | Email: firstname.lastname@example.org or Call +66 2 119 4899; and CLARA Restaurant | Email: email@example.com or Call +66 2 3496 3663.
Keep up to date with the RARE & SHARE project and up-coming activities at:
Line (@rareandshare): https://page.line.me/?accountId=rareandshare