Spinal muscular atrophy (SMA) is a rare and devastating genetic disease that affects nerves and muscles, resulting in a progressive loss of muscle control, movement and strength. There is no cure. There are currently about 40 t0 50 persons in Singapore diagnosed with SMA.
To support individuals living with SMA and to raise awareness of the disease, multinational biotech company Roche in collaboration with MDAS (Muscular Dystrophy Association Singapore) and European restaurant Atout present the Rare & Share Dinner on selected evenings from Feb 29 to Mar 27.
This is the first time the initiative is held in Singapore after a successful run in Thailand. A portion of the proceeds will be channeled to MDAS to support SMA care programmes.
The dinner, which kicks off on the rarest day of the year (Feb 29 is a leap day), is a gastronomic journey of empathy from the perspective of SMA patients where the dining experience simulates real-life daily challenges of individuals living with the condition.
Led by chef Azrin Rahman, the Rare & Share menu features four distinct courses incorporating elements that allow diners to experience firsthand the profound impacts of the condition in its early to later stages, conveyed through specially designed weighted spoons and specific preparation methods.
The dinner starts off with an Amuse Bouche Trio – Green Gazpacho of Lettuce, Capsicums and Basil; Gruyere Cheese Gougere with Smoked Salmon; and Crispy Iberico Pork Cheeks and Trotter “Cromesquis” with Apple Gel. They represent the variety of textures and flavours that individuals with SMA may still be able to enjoy in the early stages of the disease.
Interestingly, the custom glass syringe – where guests are to “inject” themselves with the Gazpacho – is a stark reminder that the disease is always lurking.
The second course is the soft and creamy Foie Gras Royale that is easy to swallow. Soft foods are often preferred as the illness progresses and individuals may have difficulty chewing and swallowing. Guests are encourage to use a spoon weighing half a kilogram to simulate the weakening of muscles over time.
The third course is the 24-hour slow cooked Wagyu Oyster Blade that reiterates the round-the-clock care necessary for individuals with SMA.
The meal ends off on a sweet note with the intricately layered Lemon Vacherin Glace, a delicate dessert that represents the rallying of various members of the community to raise awareness for the lived experiences of individuals with SMA. It also signifies hope for access to more prompt treatments, and enshrines the importance of communal care and support for families affected by SMA.
The Rare & Share Dinner at Atout is priced at $138++ per person. It takes place at 6pm on Feb 29, and Mar 6, 13, 20 and 27, 2024.
Support the campaign by making a donation here. Donations will go towards supporting MDAS’s operating expenditure in providing programmes, services, all supporting costs for over 500 beneficiaries and sustain its operating activities.
